confused
Tom
percentage of persons with the disease end up in wheelchairs.
Now I see that since the use of the interferons has been endorsed as a
"controversial" method of treatment for MS, the claim is now that 75% of
all persons with MS end up in wheelchairs. If this is true I am really
bummed out.
What is the truth? Who is lying?
Eagle Way2
this is true I am really bummed out. "
Tom,
That's nonsense. It's no where *near that high a percentage. Interferons
(good or bad) bad) have *nothing to do with how many people will progress to
any stage.
You have every right to be confused though, there is as much WRONG information
on the internet as there is right. No one is really "lying"... (unless they're
trying to sell you something)... But *everyone has there own dr.s and their
own perspectives as to the course of this disease.
We are all different, of course...and no one can predict the course it will
take with any individual, but please don't worry about erroneous "statistics"
you may run accross.
If you can talk to your doc about your concerns, then do so. If you can't,
then try to find a neuro who specializes in MS, AND who knows how to
communicate with her/his patients!!
Just live your life one day at a time and live every day to its fullest... No
time to be bummed out, now!! <smile>
All the best,
Judith
"The sooner we realize our responsibility for our own lives,
the sooner we can enter a new way of living."
Jonas Salk
LaVonne Murphy
>
> When I was first diagnosed with MS I was told that only a small
> percentage of persons with the disease end up in wheelchairs.
>
> Now I see that since the use of the interferons has been endorsed as a
> all persons with MS end up in wheelchairs. If this is true I am really
> bummed out.
>
Tom and Gang
What's "in a wheelchair" mean? Need wheels for distance? Need wheels
for length of time you may have to stand? Need wheels to just get out
of bed cause you can't support your weight in any way? Need wheels in
the afternoon when the fatigue gets to you? Need wheels just when you
go out of your house cause you feel safe in the house but are too wobbly
to go outside without the chair? Need wheels just because you think you
do? Don't use wheels when you would obviously be safer using them part
of the time?
Who keeps the statistics? The MS society doesn't. The docs keep stuff
in your personal records but they don't have to report a diagnosis of MS
to anyone. Somebody spying on all of us?
Nobody can really tell you correct numbers. Nobody can tell you what
will happen to you as an individual.
The official stand now is about 1/3. But even that number had to come
from some sort of survey that folks had to return. And, as most of us
know, not everyone answers those surveys. We sent out nearly 3000
surveys (about a different subject) recently and got only a handful
(less than 100) returned. Lot of work stuffing those envelopes for that
small a return.
Anyhow, the numbers like this can't be accurate no matter who is making
the guess.
L
SYLV77
<<What is the truth? Who is lying?>>
I don't think anyone is "lying." I think the truth is somewhere between the
grim statistics you're seeing now and the optomistic things you were told when
you were first DX'd.
This has come up before in the NG, and I still have seen no definitive answers.
I don't believe there are any. I have read about people who have one attack
of MS, and never see it again. I have also heard about people who had it and
never knew about it; it was just discovered when an autopsy was done for other
reasons.
But don't get "bummed." Live your life as fully as you can. No one ever knows
what the future holds, and that means everybody. As somebody wrote on here
once, anybody could go out and get hit by a truck tomorrow.
Take care!
Sylvia
Eagle Way2
the guess."
L,
A much better response than my own...!!!!!!
Love,
J
Grunt
what you wrote makes alot of sense out of things that have confused me for a
long time!!!!!
it is clearly a gray area- use of/need of wheelchair. and then the
question- who is coming up with the data, do they have an agenda, and how
are they going about their sampling/analysis??
i just have read the various statistics like some sort of omen or oracle
without question until now! silly me!!
thanks for the perspective,
jan g
LaVonne Murphy wrote in message
>>
>
>What's "in a wheelchair" mean? Need wheels for distance? Need wheels
>for length of time you may have to stand? Need wheels to just get out
>of bed cause you can't support your weight in any way? Need wheels in
>the afternoon when the fatigue gets to you? Need
(snip further descriptions/definitions of "need")
>
>Who keeps the statistics? The MS society doesn't. The docs keep stuff
>in your personal records but they don't have to report a diagnosis of MS
>to anyone. Somebody spying on all of us?
>
(LOL here)
>Nobody can really tell you correct numbers. Nobody can tell you what
>will happen to you as an individual.
>
>The official stand now is about 1/3. But even that number had to come
>from some sort of survey
(snip more)
mike the webman
>
> When I was first diagnosed with MS I was told that only a small
> percentage of persons with the disease end up in wheelchairs.
>
> Now I see that since the use of the interferons has been endorsed as a
> "controversial" method of treatment for MS, the claim is now that 75% of
> all persons with MS end up in wheelchairs. If this is true I am really
> bummed out.
>
Tom.
do yourself a favor,before you get all hyper and put yourself into a
attack over this.just take a deep breath and relax. ok, you feel better
now?
first off,the ABC drugs WILL keep MORE people in BETTER shape for s
LONGER time than if they where not on them.secondly,all MS'ers are still
taking the same drugs they where BEFORE taking
avonex,betaseron,copaxon.the interferons dont ENHANCE the effects of MS
they RETARD them.
i think you have your numbers mixed up.if interferons where
worthless,the number of MSers in wheelchairs would not go up.it would
remain the same.i think it may be this....now 75% of MS patients will
not need a w/c. if its the other way around it means that WE as GROUP
are LIVING a heck of a lot longer!! either way its music to my ears.well
at least when they are not ringing!
i can show you a lot of MS patients that need to be in homes,it would
break your heart.some are in their 30's!! then again i can show you 40
year olds still playing tennis.i wish i was one of them but i am not! i
have a w/c,i use it only when i go out.i can still drag my leg around in
the house,but i get way to tired when i try to go more than 30 feet.
all i am saying is we each progress at our own speed.some regretably go
downhill faster,i know i do in my wheelchair <sic>. you must enjoy each
day and be agressive in your healthcare managment.i keep telling
everyone this,FIND A NEURO THAT WILL LISTEN TO YOU AND WORK WITH YOU.
they just came out and said,everyone with MS should be on some form of
interferon.i was surprised to hear this.up to 4 months ago only RRMS was
allowed the drug.the insurance companies would not pay for it.
thats another things,if interferons caused more people to go into
w/c's...then the insurance companies would not pay the $900 a month for
the drug.they are bean counters and that is not cost effective in my
book.they would definitly NOT go for everyone with MS getting the drug
if it was worthless or put you in a wheelchair.
so relax,dont take the numbers so literally.this will only get you
depressed.i know i was when i first read all the stats on ms. when was
that...oh yeah when i first was dx'd. i dont pay attention to them
anymore,and neither should you!
each morning do this,get out of bed and if your feet work ok,go and do
something with them.i wish i had done more the last few years i walked
well besides work! i used to mountain climb,white water rapid,hike the
appallachian trail...you get the point.
i am not trying to come down on you.i should not even be posting this
letter.a friend with MS just sent me a e-mail and she is very depressed
about her neuro and all the crap in her life.she has major
depression,and she walks! so if this letter does not come across as well
meaning,caring,informative,and sensative to your needs,i am very
sorry.for i feel for you.i really did mean well when i was writing it.
stay well and sane
mike
--
what happens if you scare a neuro half to death...twice?
spam killer in effect to reply: webm...@bellsouth.net
Barbara Edmiston
helpers but we have several members of PwMS in our group who walk. One is 80
years old. Had MS for years. Many others in 50-60's. Don't worry about
tomorrow so much - but live for the day while we have it. After all we could
get run over by a bus tomorrow!! Love Barb.xx
?
direct mail questionairre. The industry standard is about 5% reply
rate. When you consider the medical and personal risks involved with
admitting to MS, your low level of response is to be expected (and not
very heartening).
Jeff
Helen Williams
from "Grunt" <som...@usa.net> contains these words:
>
> i just have read the various statistics like some sort of omen or oracle
> without question until now! silly me!!
There was a lovely little paperback on the market called "How to Lie
With Statistics" by someone called Darrell Huff. Don't know if it's
still in print.
A few Christmases ago the NSPCC in UK got egg on their faces when it
was revealed that they had cooked the national child abuse figures
to a high degree, by being rather wide-ranging about their definition
of 'child abuse' in comparison to the definitions used by other
agencies and government depts.
The motto is; never accept any information without questioning it.
And while I'm on this topic, can anyone tell me why it is that so
many elderly people who are perfectly compus mentis happily suspend
all disbelief and make themselves prey to tricksters and
con-merchants in a way that they would never have done when they were younger?
Cheers,
Helen W:)
Brian & Chrys
Brian Gee
do not have to use a chair.
Brian
Eagle Way2 wrote in message <19981122135958...@ng73.aol.com>...
>"the claim is now that 75% of all persons with MS end up in wheelchairs.
If
>this is true I am really bummed out. "
>
>Tom,
LaVonne Murphy
Helen Williams wrote:
....
> The motto is; never accept any information without questioning it.
> And while I'm on this topic, can anyone tell me why it is that so
> many elderly people who are perfectly compus mentis happily suspend
> all disbelief and make themselves prey to tricksters and
> con-merchants in a way that they would never have done when they were younger?
Hi Gang
I don't think we can qualify age here so much. The stuff that happens
to the elderly is publicised more cause the rest of us are too ashamed
or scared to admit we were that stupid.
Also some of those *compus mentus* are slower thinking than younger
folks. They just need more time to think. The sellers of the *snake
oils*, or whatever, talk fast and put a little pressure on those older
folks cause they know they aren't giving the older folks time to problem
solve.
And then there are the ones that sell the *poor me* or *poor kids*
stuff. They are often convincing and one doesn't find out they aren't
for real until later.
And then there are the ones that tell you you will win $$ or a new car
or get something free, etc. Lots of us are on fixed income and could
use some of the stuff offered. Problem is, have you ever known a winner
of one of these door to door raffles or a magazine subscription contest
or any other form of this? Not me.
L
Helen Williams
from LaVonne Murphy <msca...@att.net> contains these words:
> Helen Williams wrote:
> ....
> > The motto is; never accept any information without questioning it.
> > And while I'm on this topic, can anyone tell me why it is that so
> > many elderly people who are perfectly compus mentis happily suspend
> > all disbelief and make themselves prey to tricksters and
> > con-merchants in a way that they would never have done when they were younger?
> Hi Gang
> I don't think we can qualify age here so much. The stuff that happens
> to the elderly is publicised more cause the rest of us are too ashamed
> or scared to admit we were that stupid.
> Also some of those *compus mentus* are slower thinking than younger
> folks. They just need more time to think. The sellers of the *snake
> oils*, or whatever, talk fast and put a little pressure on those older
> folks cause they know they aren't giving the older folks time to problem
> solve.
>
I made a complaint to Trading Standards Office this week because in
the lobby of our local supermarket was a middleaged woman inviting
people to book a free 'therapy session' in their own home, in order
to 'relieve pain from arthritis and other conditions.'
I asked her what kind of therapy she was talking about - she said she
didn't know, was just promoting it (!!). So I asked what kind of
therapists they were, what were their qualifications etc. She said
that they were either male or female and people could choose which
sort to come to their home (no, I am not joking). She said that
'anyway, the therapy has been endorsed by the medical profession'.
When I asked exactly who in the medical profession, she again said
she did not know. She got exasperated at that point and delved under
her table for a card which she thrust into my hand. From the card it
was plain that the company was selling 'cyclo therapy equipment'
whatever that is.
Watch out for this company, they are obviously operating in the
south-east of England at the moment. They are called Euro Therapy UK
Ltd and if they come anywhere near my home I will chase them off with a broom!
Therapy session my ass!
Cheers,
Helen W:)
Helen W:)
Irene LaVergne
>
> The message <_4362.2741$X3....@news12.ispnews.com>
> from "Grunt" <som...@usa.net> contains these words:
>
> >
> > i just have read the various statistics like some sort of omen or oracle
> > without question until now! silly me!!
>
> There was a lovely little paperback on the market called "How to Lie
> With Statistics" by someone called Darrell Huff. Don't know if it's
> still in print.
> A few Christmases ago the NSPCC in UK got egg on their faces when it
> was revealed that they had cooked the national child abuse figures
> to a high degree, by being rather wide-ranging about their definition
> of 'child abuse' in comparison to the definitions used by other
> agencies and government depts.
>
> And while I'm on this topic, can anyone tell me why it is that so
> many elderly people who are perfectly compus mentis happily suspend
> all disbelief and make themselves prey to tricksters and
> con-merchants in a way that they would never have done when they were younger?
>
> Helen W:)
I think that many elderly folks were not raised to be suspicious or to
question authority, so, especially if the person presents themselves as
authoritative or a mailing looks official, they are likely to "bite".
Another factor is con artists are very charming and quickly become a
friend to these lonely people.
My cousin's mother-in-law became a "victim" of these scams dealing with
sweepstakes. She was convinced she had won a lot of money and that she
just had to send one more entry--oh, and buy more useless
trinkets--she'd "win". She was convinced these people were pulling for
her and wouldn't deceive her. She spent herself into poverty and died 2
years ago, leaving an estate of worthless stuff. She was mentally
competent about everything except this and she wouldn't be dissuaded. I
think some folks hope for wealth finally and want to leave their
families something. Or the wealth is seen as a way to stay
independent. This lady had hoped that she could hire help and so stay
out of a "home".
I think many of these sweepstakes scams would be eliminated if the
senders would be required to put the announcement (you have won
$1,000,000) in the same size print as the disclaimers (you may be one of
the winners. Odds of winning 1 in 7 million.) Now the "good news" is
in 40 point type and the real news is in 6 point type.
Wish we were people who treated everyone with respect and honor. Until
then, I'm afraid there will be scammers and victims. Maybe the aging
baby-boomers with a healthy dose of cynicism will put these jokers out
of business.
Irene
Helen Williams
from ire...@mail1.foxinternet.net (Irene LaVergne) contains these words:
rs,
>
> Maybe the aging
> baby-boomers with a healthy dose of cynicism will put these jokers out
> of business.
> Irene
Irene, I am doing my best over here (vbg).
Best wishes,
Helen W:)
John Smith
thats a good post and worth noting.Statistics are only as good as the
questions they seek to answere.Too many people just look at the base figures
and assume that they propose to confirm the obvious...........but if you
drill down to the actual questions asked in compiling the statistics the
flawas are more aparrent.Pharmaceuticals,investment houses,Insurance
companies etc. all rely heavily on Stats/clinical trials/surveys to prop up
questionable findings.A notable recent one was the withdrawl of a Parkinsons
treatment which turned out to be toxic.How could this have escaped the
attention of the researchers IF the clinical trial model was as sacrosanct
as we are led to believe ,and the trial period is as long as we are
told.?Simple.......the questions asked in the trial failed to cover toxicity
adequatly.Was this by chance or design............few know the answere to
that one.
To question research trial models...........you need to be extremley
conversant with the science involved.....and then some.
As for the older generation........they come from a time when there was a
distinct demarkation between a silly notion of good and evil.You were eithe
one or the other.Now we are aware that good and evil are in the eye of the
beholder .....TO SOME DEGREE.In extreme cases it is easy to observe.But
using Stats,Poisson distribution, the vast majority fall safley within the
extremes.
Regds Sean
rob
wrong. tsk, tsk.
Tom wrote in message <365855...@hotmail.com>...
>When I was first diagnosed with MS I was told that only a small
>percentage of persons with the disease end up in wheelchairs.
>
Thats the sugar coating...
>Now I see that since the use of the interferons has been endorsed as a
>"controversial" method of treatment for MS, the claim is now that 75% of
>all persons with MS end up in wheelchairs.
The two "claims" are unrelated and incorrect. Neither are the benifits of
Interferons in question or controversial, nor the 75% figure.
> If this is true I am really
>bummed out.
>
>What is the truth? Who is lying?
*WARNING* the upsetting truth is below...
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Within 15yrs of initial diagnosis the majority of MS victims are confined to
whellchairs/ I think the specific stat is 56%. But since it does not apply
speciically to me (or you) I dont give it to much weight. The interferons
have been shown to delay the progresion of disability. Get on one of them.
If you can, add copaxone as well.
The MS society is great for minimizing the devestating effects of MS.
When people who have MS die it is almost always because of MS. But that is
changing due to symptom manegment and a better understanding of the pitfalls
of a crappy disease that is too cowardice to kill you directly. If you keep
your eyes open it should never cause you any problems. (other than the
imediate and obvious pain in the ass that it is)
My last exaserbation was caused by a very serious and life threatening
bladder kidney infection that was caused by... you guessed it... MS. (my
eyes werent open BTW) Visciouos cycle. I was throwing up like I never knew
a human could do. My crying wife was scraping vomit out of my throat trying
to help me breath while I was on my hands and knees in the shower with
freezing cold water pouring over me. In less than two days I had lost the
entire right half of my body, and my vision. That is the reality.
If anyone has wondered why I treat this disease so agresivally... now you
know. I played the tough guy the entire time... was I worried? Fuckin-A!
But hey, like is consistant with this disease I have recovered some function
of my body. But with each exacerbation you will/might recover less. (some
recover better for some reason) Until the residue piles up, and you will be
glad to be in a wheelchair. That is why imediate and inteligent treatment
is so all fired important. People get mad at me for being so uh...
non-Mr-happy-poster, oh well. The truth matters.
I prefer to know what "may" be in store for me. But what "is" in store for
me is unknowable. Same for you. You may have only 3 or 4 attacks and then
never have another in your lifetime. But the stats point "in general" to a
progresive course that avgs a little over an attack a yr. Then less
attacks, but continuing disability. Its almost as if you get enough attacks
that there isnt room for any more serious ones. Then just continuing
progression at a slow rate. The relapsing/remmiting, secondary progressive,
etc... are nothing more than classifications of a varied continuum.
Although some might be lucky enough to "stick" to R/R. For the moment I
have, so I thank god for that. But as has often been mentioned here before
we are all individuals, and nothing is writ in stone. Its just as likely
that you may never another attack. who knows?
*WARNING* even scarier info below!
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The currant stats on death on not what any of the major orgs like to reveal.
I am not sure if they think that they are protecting people by downplaying
the seriousness of the disease or what. (?) I personally feal their
behavior is both unethical in its lack of truth and its downplaying of the
seriousness of the disease.
It does kill, and its not infrequent whatsoever. The death rate on avg, is
death within 22 yrs of initial diagnosis. That as well is changing with
earlier and earlier diagnosis changing the stats. What may not have been
diagnosed until the age of, lets say 40, can now be reliably diagnosed at
30. That earlier diagnosis due to MRI isnt going to make you die 10 yrs
earlier. But it does confound everything. We'll have to wait and see how
the numbers pile up before we can have a reasonable statistic worth anything
in the way of predicting the future. I dont put to much weight in the stats
on mortality as well. Simply because, one, we are all individuals, and two,
we are much better at symptom mang. and infection control. (the main cause
of death)
It may, coming from me, sound pretty grim, but its a hell of a lot better
than what could have happened to us. There are worse things and I am glad I
dont have them. But I am not to happy about having MS in the first place.
I would have to say that with every yr we live we are probably able to add
another yr (in addition to the one lived) onto our lifespans simply because
of medical/scientific advancements.
The thought that MSers lifespans are not very differant from healthy people
is a load of BS. Its the head in the sand attitude that allows the slow
pregression into new treatments to continue.
I think what may contribute to many peoples mistaken view of MS as almost
benign is that they only get to see the ambulatory victims. They dont
routinely see the mass amounts confined to nursing homes/assisted living.
They then try to bolster their scared false confidence/resolve by pointing
only to the "visible victims", while conveniantly ignoring the crippled/MIA.
I'll shut up now.
Rob
KaMatthews
>
>I think what may contribute to many peoples mistaken view of MS as almost
>benign is that they only get to see the ambulatory victims. They dont
>routinely see the mass amounts confined to nursing homes/assisted living.
Absolutely. The closest the public has come to seeing a really bad case is
Annette Funicello. (and she would probably be in a nursing home if she didn't
have the means for 24 hr a day care).
Kathi
Patti
This is the most depressing info I have read here.... If this is true, what
keeps us all going? I mean, why not put the car into drive and find a brick
wall somewhere? I cried for hours after reading this note, yelled at my
kids over the most inconsequential things, ... first thought I had, well,
this is refreshing, someone else with a different "truth".... but now,
well, I sure do wish this list were moderated when I read stuff like this.
Patti
rob
Patti wrote in message <73pepf$38qs$1...@newssvr04-int.news.prodigy.com>...
Patti, you are 100% right. It doesnt make people feal good when I post
stuff like that. Thats why I probably dont do it/wont do it ever again.
But remember please that those are stats that include msers from decades
back. When treatment wasnt as good. Also you are an individual. Your case
will probably be better than the stats. Mine/everyone elses as well. The
simple fact that we have access to our comps, access to each other as a
support group, and the combined experiance of litterally hundreds off yrs,
jell to make us the the best prepared group in the world.
You guys, I hope you understand now why I dont like all this BS bee sting,
diet, dinosaur fart, amalgum, etc... wacko treatments. This disease is
serious. The joker who is touting bee stings is doing so irresponcibly, and
worse, unethically. By convincing you of worthless treatments he is/might
be costing you your LIFE. He may be contributing to the worsening of your
condition by delaying proper treatment. Or worse.
Let them delude themselves. Just dont be one of the cond. Its much tooo
important. It scares me worse when someone who is smart and knows better
touts their particular theory to this group. How can they do that? The
guilt of what they might be doing to others could never be something I could
live with.
Can you imagine how you would feel if you let your mother be convinced that
chemo/radiation/masectomy wasnt necessary and instead she should just eat
apricot pit extract?! How would you feel after shes dead? how about the
scammer... is he/she going to come and make everything all better once
mommys gone?
Patti, on the new meds, and with a watchfull eye on your health, I dont see
any reason why you shouldnt live forever. me either. But by delaying
treatment of the apropo type you can get yourself into hot water.
Stefanie and I used to go garage selling every summer weekend when we had
nothing better to do. I picked up tons of old med textbooks. In one from a
long time ago, I found that msers died earlier than victims of polio. That
was sobering. But times change, medicine advances, our understanding of
this disease progress's. As all of that is going on our lives get a day
added here... a day added there. One less exacerbation. It all adds up and
we get better and better with each new generation of meds. 10yrs from now
well all be on something else. I garuntee it.
Sorry for being so grim. After reading "your" post I kicked myself for
having such a big mouth. I am sorry.
Tell your kids it was my fault. Because it was. I wont post that stuff
anymore. Please dont run the "possible" future through your mind over and
over. Most problems arise from the side effects of this disease. Not the
disease itself. Just keep your eyes open. If I had payed better attention
to my symptoms I never would have become sick, the exacerbation would have
been caught in time, and I am convinced that I wouldnt have been put in the
situation I was in.
Hindsight is 20/20 as they say. But by minimyzing the possibilities the MS
groups do us all a big diservice. THey mislead the public and dont engender
the support we need, and we the victims are mislead.
can you imagine anyother org doing that? I cant.
Rob
BTW last night I just added avonex to my pile of meds. God punished me for
having such a big mouth. It was worse than the beta. And I blead like a
stuck pig from the shot. But at least it didnt hurt like the copaxone had.
Ill trade an entire nights rest anyday to avoid the daily acid injection.
lol.
Now I just have to convince myself that it will be worth it adding Copaxone
back into the mix in a week or two. It was so wiierd not having any pain.
First day for a long time. It was a breath of fresh air.
Rob
rob
Helen Williams wrote in message <199811290...@zetnet.co.uk>...
>Rob,
>What are these stats you keep referring to? Who compiled them and by
>what means?
They are the latest current statistics. If you guys want serious info then
ignore the MS orgs. I'll get the stuff so that what I said leaves the realm
of opinion and becomes accepted knowladge. As soon as I find it.
>They are far more gloomy than any I have read or had
>mentioned to me by my neurologist, and he is not usually a pollyanna.
>
>Helen W
They are worse than mentioned to me by my docs as well. I cornered my last
one and she fessed up. This disease sucks. As much as we would all like
it to be just an agravating annoyance... its much more.
They also see the last stages less and less as they progress. They just
have no help to offer other than what a gp might do for infections and the
like. Nueros are a larger benifit for us in the early stages than they are
for the chronically bed-bound.
But like I mentioned before... I should have kept my mouth shut... but its
the damn con artists/honestly misguided, that yank my chain when I see them
possibly delaying someones decision to enter into an intelligent early
treatment.
I'll put a "Dont read" in front of the thread when I post the study results
and the refs.
Rob
John O'Brien
Lin wrote in message <3660D6...@fnet.FriendlyNet.com>...
>> You guys, I hope you understand now why I dont like all this BS bee
sting,
>> diet, dinosaur fart, amalgum, etc... wacko treatments. This disease
is
>> serious. The joker who is touting bee stings is doing so
irresponcibly, and
>> worse, unethically. By convincing you of worthless treatments he
is/might
>> be costing you your LIFE. He may be contributing to the worsening
of your
>> condition by delaying proper treatment. Or worse.
>Nicely Put!!!!!>:-)>>Lin
No; thou dost errith in thy way of thinking. All bee sting therapy is
and has been long proven to be effective for a number of illnesses.
All therapy is conducted with the expectation that at any time
something
may go wrong and an allergy can manifest itself; this is why a
bee sting (anaphylactic) injection kit is always kept nearby
when doing the stings.
Treatments for MS are few and far between for MS and are only
for the Relapsing Remitting variety (for reasons previously stated)
and even they don't do much good for many and they are
overly priced for many as well. Bee stings (and dragon farts)
are available to any who are brave enough to try them and
if you think I am going to wait around and ROT to death while
I wait for the medical profession to get around to "curing" me
Then YOU, are going sadly mistaken. I've been stung too
many times by the doctors and they can hurt you a lot
worse than a few bee stings.
Grow up.
John
Helen Williams
What are these stats you keep referring to? Who compiled them and by
Rene
>This is the most depressing info I have read here.... If this is true, what
>keeps us all going?
Tons of Prozac ;-)
No, seriously, for instance: I bought myself a CD today and I liked
one of the songs so much that I played it twenty times in a row. I'd
like to listen to it again tomorrow. Today it's as simple as that.
Let's see what tomorrow brings.
> I mean, why not put the car into drive and find a brick
>wall somewhere?
I strongly recommend a concrete wall, because with all those safety
belts and air bags you're in danger of just damaging your body beyond
recognition. The cops may also give you a ticket for exceeding the
speed limit right before the impact (I'm a cynic, aren't I?)
>I cried for hours after reading this note, yelled at my
>kids over the most inconsequential things, ...
Well, I think you just answered your own question. Your kids need
you! 'nuff said.
>first thought I had, well,
>this is refreshing, someone else with a different "truth".... but now,
>well, I sure do wish this list were moderated when I read stuff like this.
No way! It's a "truth" we gotta live with. If you don't like Rob's
statistics, look for better ones. After all they're just numbers, we -
on the other hand - are individuals with unpredictable futures.
Furthermore, no one knows what research is going to bring. Probably
there will not be a cure within the next few years, but a steady
evolution of more powerful drugs. I think there are no statistics yet
that show how many years the transition from RR to SP is delayed by
the use of interferons. What about higher doses of beta? What if we
combined beta and copaxone? Maybe add some antiviral drugs, IVIg,
enzymes, certain fatty acids, and, and, and.
So... let me finish with a joke: In Germany they say "The situation
is serious, but not hopeless. In Austria they say "The situation is
hopeless, but no serious."
It's a matter of attitude which way you prefer to see it, but
dispairing is of no use at all.
Bye,
Rene
edward hill
i was going to post a rebuttal to robs "factual" post. but decided to leave well
enough alone. he seems to be pretty unhappy.
no offence rob, but i think there was a bit of venting going on there.
it sounds like you had a horrible time with UTI's. i'll be happy to discuss this
post and yours offline. we don't need more flames.
fact is robs post though informative has a few holes in it.
for one there are no references or pointers. that's pretty important when
stating
things as fact. so you can't check the info. IMHO that makes it OPINION.
at one point he says that our average life expectancy after DX is 22 years, then
backtracks a bit.
if he's quoting a study and that study is say at least one or two years old at
best
then he's talking about folks DX'd in the early seventies. more likely the study
spans DX's from 15 to almost 30 years ago.
15 to 30 years ago you had to be in pretty rough shape to even get a DX.
so right there we are probably talking advanced cases and or aggressive
disease progression. worst case stuff.
there was no way to slow disease progression. the western diet was meat
and potatoes smothered in salt and animal fat with lots of bread (gluten rich)
on the side. most folks smoked and drank pretty hard and followed a cuppa
coffee around much of the day.
that life will and did kill folks pretty quickly even without MS.
there were also no ways to deal with most of our symtoms. so that accelerated
things.
MS is definitely a killer. infections and breathing are serious issues. but like
rob said in his post. the averages aren't individual predictors. these issues
are
quite manageable. rob's right in this being underreported and that that's a
disservice. we need to know about threats to deal with them.
sorta' simple minded really. it's kinda like the older neuro's who test you and
try not to share the results with you. probably well meant, but grossly
misplaced
and out of synch with lifes current realities.
not real sure about the wheelchair figures either.
again, no studies sited in the post. so it's really opinion. and at that, i'd be
leary of most studies purporting to deal with that issue. as someone else
posted. "define in a wheelchair". lots of folks who walk better than me
have electric chairs. i'll probably hold out for another year or so. it's
hard to say definitively.
don't let it get ya down! this bug isn't all that unpredictable or
uncontrollable anymore. it's still got surprises for us but we can do a
lot of things to even the odds that were impossible a few years back.
best wishes
ed
Patti wrote:
> ROB!!!
>
> This is the most depressing info I have read here.... If this is true, what
> keeps us all going? I mean, why not put the car into drive and find a brick
> wall somewhere? I cried for hours after reading this note, yelled at my
> kids over the most inconsequential things, ... first thought I had, well,
> this is refreshing, someone else with a different "truth".... but now,
> well, I sure do wish this list were moderated when I read stuff like this.
>
> Patti
Lin
John O'Brien
rob <22rdu...@idt.net> wrote in message
<73q8u6$e...@nnrp2.farm.idt.net>...
tooo
>important. It scares me worse when someone who is smart and knows
better
>touts their particular theory to this group. How can they do that?
The
>guilt of what they might be doing to others could never be something I
could
>live with.
>
sit around waiting for what could never happen.
THE CURE.
I've been helped by a number of things which are of the
"alternative" approach. Including diet and supplements.
I do have doctors monitoring my efforts. I'm not STUPID
as you may be ass uming.
Conversely, I've been harmed by several of the
"Standard" treatments give to people with MS.
Judge Not!
John
d...@cheetah.net
Clipped
Clipped
I'm glad I re-read this after quickly going
over the contents. The first time, I came
away with a sequential misinterpretation.
I had it as a bee fart and a dinosaur sting.
Oh well. However, the mind's eye picture was
a little more funny to me.
Donn
rob
>>
>But if we don't tell people what is helping us then some of us will
>sit around waiting for what could never happen.
>THE CURE.
I think that would be inadvisable as well.
>I've been helped by a number of things which are of the
>"alternative" approach. Including diet and supplements.
>I do have doctors monitoring my efforts. I'm not STUPID
>as you may be ass uming.
I am not assuming anything. In fact you may be very intelligent. But that
doesnt make you immune to the effects of wishfull thinking. Or to
misadvertantly ascribing the effects of normal remision to whatever
treatment you may be trying out at the time.
>Conversely, I've been harmed by several of the
>"Standard" treatments give to people with MS.
>
>Judge Not!
>
>John
John, I am not trying to corner you. But I would like you to tell me what
treatments have harmed you so that, if it seams reasonable, I may try to
avoid them in the future.
Corticoids have proven benifits.
acyclovir as well.
radiation,
chemo,
the ABC's,
maybe others that I just cant think of at the moment.
These are all PROVEN in randomized, double blind, placebo controlled, peer
reviewed studies to improve the outlook of MSers. opinion and anecdotal
evidence is worthless in the face of science, as well as the extreme risk
involved with delaying intelligent treatment.
Why would people study bee stings only to sabotage the study? It makes no
sence. They study garlic, ginsing, onions, vit E, ginko, beta-carotene,
cruciferous veggies, fish oil, vit C, garcinia cambogia, caffen, soda pop,
green tea, cats claw, silymarin,aspirin, I can go on and on. These are all
unpatentable products that can make no one any money. Just like bee stings.
Yet they are examined, just like bee stings.
Studys are usually done by doctoral students hoping for the Nobel prize.
No chance on earth any great conspiracy is influencing americans scientists.
It makes no sence. Why would there be a conspiracy for this one and only
disease, and (pick your treatment of choice and insert it here) your pet
treatment?
If bee stings helped it would be the greatest discovery of the century. A
free treatment for one of the crummiest diseases. Hundreds of people are
looking for just such a thing. But they are at least willing to go through
the laborious process of at least proving their claims.
Bee stings do not help, they may even be a detriment.
I think if someone is going to take their chances, diet is a better
alternative. But I am not even comfortable recomending that as harmless
because a scewed arginine/lysine profile can make herpes infections worse.
And they ARE proven to be implicated in MS in some way. (the herpes not the
amino acids)
I dont like the conflict generated by my posts. seriously. But the
alternative... to sit tight with pursed lips while I see someone damaging
their future, is even less "likable".
I'd rather be the unliked voice of sanity than the loved voice of
capitulation.
Robert Duncan
To respond to my e-mail remove my tutu.
John O'Brien
>>serious. The joker who is touting bee stings is doing so
irresponcibly, and
>>worse, unethically
Surely, sir or madam, you must be jesting. I never act irresponsibly
and as
for unethically, even IF I were a doctor it would not be unethical for
me to
support your right to have a treatment which I even thought might be
a help to you and to take steps to ensure as much safety as possible.
I just love people who jump in with both feet in mouth before
putting brain in gear.
I think I've been with this list/newsgroup since it was only a
mailing list 5 or 6 years ago and I've help quite a few people
along the way to better health. There are always skeptics,
but usually the skeptics are those who are afraid to figure things
out for themselves. I.e., explore the alternatives, calculate
the risk and take it, if it is not too great and the benefits
could be plentiful.
John
John O'Brien
what
>treatments have harmed you so that, if it seams reasonable, I may try
to
>avoid them in the future.
>
>Corticoids have proven benifits.>acyclovir as well.>radiation,>chemo,
See, like I said, I have Chronic Progressive and my neuro won't
support any of these treatments for CP (or PP).
Baclofen and (whatever that new muscle relaxant is) put me
in a wheelchair and I never knew what hit me till I forgot to
take it for a few days. Since, I wouldn't touch it w/10 ft pole.
Amantadine and Cylert didn't do diddly for me; it was a waste
of time and money taking them.
Solumedrol and Oral Prednisone caused weight gain and
soon after the Solumedrol the hearing in my left ear was shot
all to hell. Others have been less lucky; I have one friend
here who has had to have all her joints replaced thanks to
an idiot doctor who had her on it without supplements.
She's now preping for a second round of replacements.
If you would take the bother to quit complaining and
explore some of the info available about bee stings
it might console you just a bit. But why do I bother????
Things like this are why I was staying away so much
for the past 8-10 months. I get tired of trying to support
what I know can help (SOME) people.
I have better things to do with my new found energy.
John
rob
John O'Brien wrote
>No; thou dost errith in thy way of thinking. All bee sting therapy is
>and has been long proven to be effective for a number of illnesses.
I am always eager to be better educated. could you enlighten me? What
other illness's would these be?
>All therapy is conducted with the expectation that at any time
>something
>may go wrong and an allergy can manifest itself; this is why a
>bee sting (anaphylactic) injection kit is always kept nearby
>when doing the stings.
>
Always a wise choice. Once I worked on a clover farm as a youngster.
billions of bees, litterlay. Never was stung once. After the harvest when
the fields were nothing but dirtclods and dustclouds... I could see this
flying thing from over a hundred feet away as I awaited the truck coming to
pick me up. It flew closer and closer. Landed on my ear, stung me, and
flew off. Before one minute had elasped my ear had swollen shut. Scared
the bajesus out of me.
Went to the doc, but nothing ever came of it, thank god. Weird. I have never
been allergic, I dont even think I was on that particular day. Its more
funny than enything else. (just an old memory you brought up) I was stung
not to long ago, 3 times in one day. When I hadnt been stung in yr\ears.
Its a wierd world.
>Treatments for MS are few and far between for MS and are only
>for the Relapsing Remitting variety (for reasons previously stated)
>and even they don't do much good for many and they are
>overly priced for many as well. Bee stings (and dragon farts)
>are available to any who are brave enough to try them and
>if you think I am going to wait around and ROT to death while
>I wait for the medical profession to get around to "curing" me
>Then YOU, are going sadly mistaken. I've been stung too
>many times by the doctors and they can hurt you a lot
>worse than a few bee stings.
>Grow up.
>
>John
???
I am happily immature thank you very much. Why would I want to grow up?
For that matter why would anyone? Ah... but thats beside the point. As to
the beestings... you can qualify anything to death. No matter how well they
do the study... you can claim that it was either done wrong, or done
dishonestly. When there is, nor will there ever be anyreason to claim such
a thing.
If things are benificial they have a habit of being readily apearent. Not
hidden.
Do what you want John. Its your life. But please consider the
ramifications of persuading someone away from a "proven" treatment.
Rob
mike the webman
i read Robs post yesterday and said to myself,yes most of this i new
from deduction or have read before. i have said and posted much the same
information but not in such harsh words.Rob did not hold back any
punches folks!
now some of his figures i have not seen in print,but he has stated he
will go and compile all the info from the sites and books he has read
and post them for us.i tend to believe he has the facts to back up his
remarks.if not,he has some well written reports based on deduction
suggesting that these facts are true.in either case,this is not a post
we should dismiss as a vent.
i saw Robs second letter where he tried to relieve the fears of those
that are new to all of this.that was a little more like how i explain
the tough questions people can not handle.so when any of you say "ROB is
depressed and this was his way of lashing out" i tend to disagree.if he
was in a major depression one or two frightened letters saying *oh my
g-d,im crying* would not have phased him. he would have responed with
*deal with the facts* or *get used to it*.
was he right in posting this here? i do not know for sure.we may be
adults,but having to face our 'id' is another story. i would like to get
a discussion going on this. "just how much should we tell a newly dx'd
MSer about the crippling effects of MS?
think about that gang,this is not the 60's when someone is dx'd and is
already in the late stages of MS.these days,with MRI's and spinal taps,a
dx is usually made while the person is still walking,working,and has a
normal life! damn,the MSers spouse has not even left them
yet!<g><joke><do not panic!>
depression is one of the first things a newbie has.now compound that
with the MS (positive dx) news a neuro tells them and how do YOU think
they feel? now factor in those insensitive neuros that just blurt it
out,or when the receptionist tells them when they call for the MRI
results!
i do not feel we should keep anything a secret from those with MS.i am
the first to slam the NMSS for handing out such sugar coated
propaganda.but lets look at that for a minute.lets just stop and look at
the big picture.like maybe the NMSS did when they wrote those info packs
i hate wth such passion.
the first place most newly dx'd MSers go is the NMSS.what information
should someone with NO information get? as a general rule,these are
people that have many productive years ahead of them.they are NOT in a
wheelchair.they do NOT have blindness or vision impairment.their limbs
are still working.they just had some problems that caused them to seek
medical advice and find out what was wrong.then they get a MS dx and
flip out! they go running for any information they can find,i know i
did.
when i went to the MS chapter here,i grabbed every pamphlet they had!
there must have been over 20 of them! none said anything about MS being
a killer.ok,none said it was a picnic,but all that garbage about playing
tennis and jogging 300 miles everyday before breakfast <grin> give me a
break!
the information they provided was written not to depress you but to
inform you life can go on,even with MS.they even tell you how to make it
so.it was only when i got to the books about utensils and devices to
help you get dressed that i started to see the full effects of MS. but
even that was done in a way to say...if you are having "just a teeny
weenie bit of trouble doing this,may be suggest" <grin>
now here's what i see as a problem.all the MS groups out there tell the
newly dx'd about THIS NG.with the current computer explosion and easy
webtv access more people are online now.so we have a lot more nubies
reading our posts because they can get to them.we are now one of the
first places they look for information. i do not want to censor the
NG,do not flame or slam me thinking that is the case.i am just asking a
open question that hopefully will raise all our awareness to this issue.
so here goes: just how much information should we be posting about what
will happen to them? who here wants to be the one to push someone into a
deep depression? i know ROB did not want to.just look at his 2nd letter.
if we take a poll of the ng members i know a lot will have one or more
of the following: be w/c bound,unable to work and on ssdi/ssi,have had a
spouse leave them,need a voice program to dictate letters,need 24 hour
care,the list goes on and on.i have noticed since i came back to the
group that there is no discussions of w/c use. nobody has a tag line
saying *dictated with dragonspeak*, why is that? have all the MSers with
those problems passed away? come on guys,these are great ways to inform
the newly dx'd and get real conversations about this stuff going.
i know a lot of new MSers want to know the numbers.what is the
percentage that DO go into wheelchairs,am i a candidate for one or not?
will i end up with all my limbs paralized, what are the tell tale signs?
now these are very good questions,but not questions anybody can really
answer.maybe thats why they have not seen anything about them in
print.what i have seen is two different sets of numbers on wheelchair
use.the NMSS and the NMSF.the (NMSF) foundation has a more realistic
report.they do not pull the punches as much as the NMSS but are not in
my views harsh with the statistics. they are a organization that deals
with ALTERNATIVE medicines as well as FDA approved meds.they are very
good in explaining the benefits of both.they *also* show you how to use
both together at times. they also do not get as many newly dx'd patients
as the NMSS.so they can be a bit more blunt in what they say.you are
there for alternative meds right? that means you researched and found
them or the FDA meds are not working and someone gave you the their
name.either way you have had MS for a while and know some if not most of
the hard cruel facts,so a blunt approach is not going to hurt you.
a lot of you know i am one of the happiest and most fun loving people
around.i have MS but as the cliche goes,MS does not have me! i can get
mad at times and (post)slam someone so hard they go through the wall!
yet i try to be informative and helpful when i can.i am in a
wheelchair,i have ON,cronic pain,get UTI's,can not work,my bladder has a
direct line to the bathroom,and i have a multitude of other
problems.that does not mean anything except i have been around the block
with this stupid disease and know a few things about it.
i remember a post last year from a gal newly dx'd that slammed a poster
that said MS will eventually kill you! she was livid,she said MS does
not kill you.now knowing that to be false,i jumped in.<g> i explained
that MS like AIDS does not kill you.what it does is eats away at your
system till something else kills you.we as a group have to monitor our
health,upper resperatory ailments to pick just one thing can be brutal
for us.a cold or flu can become a life threatening problem due to our
muscles not being able to cough up the flem.muscles that are effected by
the MS!if we let it progress it can cause death...death
certificate,Pneumonia,not MS! now we all know that cold would not have
killed us if we did not have MS.
now i do not know how many of you read SYLVIA's (is that your
name?)post in that stupid flame war with bill,please,do not dredge up a
thread i wish would go away! i am just using it as a reference for this
post.sylvia had stated that this ng was lacking solid info.that the 'old
guard' with knowledge had left due to all the non-medical traffic this
group generates. well i responded in a nice way to that line.it was a
slam to a slam she had written but i did it hopefully with some tact. i
saw no reason to tell her that some of the old timers with tons of good
knowledge about MS no longer had the capability to read and respond to
this ng.i saw no reason to say that some of them are now in homes due to
progression and the need for 24/7 care.no reason to say that some had
passed away ....some as recently as a few days ago.there was no reason
to depress anyone reading the thread.enough people were depressed
already just FROM the flame war.
so it all boils down to this.what do we tell the newly dx'd.there is no
NG guidelines to follow here.heck,even the recently deceased have a
manual for the recently departed,just watch the movie beetlejuice and
see! <grin>
i hope this letter came out ok.this was not a rant.just a few thoughts
i had and wanted to share to maybe make some of us more sensative and
aware of what we say.
stay well
mike
P.S.
the majority of advanced MSers are not on the internet.they cannot use
it due to problems they have.they are in nursing homes conveniently put
out of sight of the real world.24 hour a day home care is expensive and
if family has to do it sometimes impossible.just ask Noreen about this.
Patti
I apologize for assailing you with this, I guess it all just got too much
for me after reading that.
I had 2 "attacks" in 4 1/2months so I already know what my future holds for
me, so the reality of what could be hit me so hard... it was MY fault for
not bein strong enough to face it... being a single mom with an sob ex
doesn't help matters either... so I guess I over reacted.
That plus my doc wants to switch me already to the copaxone from the avonex
since I did have these exacerbations so swiftly... then, this trigeminal
neuralgia hit and I just fell to pieces.
I have often wondered, if there are 300,000 of us with MS, maybe 300 or so
are registered on Dixie and Ron's map, what is everyone else up to... or are
they incapacitated so they can't even chat online here...
It is all very overwhelming.
Still hoping for the best though scared as shxt.
Hugs,
Patti
Patti
a pity party, huh? I like the not serious part they say in Austria...
Hopeless, but not serious... LOL... thanks for a bit of perspective there.
but I am very worried over my kids, if I am not a good role model for coping
with this, how the heck are they supposed to be? I got a card today from
the gals at work, one wrote to me to be strong... hard as heck when I feel
like a piece of jello mold, all wobbly in the legs (and head lately too).
Guess I just gotta buck up, hard as it is..
Hugs,
Patti
John van Veen
> >
> > There was a lovely little paperback on the market called "How to Lie
> > With Statistics" by someone called Darrell Huff. Don't know if it's
> > still in print.
It can be found in used book stores. We have
a copy sitting around someplace.
No home should be without one.
John the bookworm
Denise the bookwormette
LaVonne Murphy
mike the webman wrote:
> i would like to get
> a discussion going on this. "just how much should we tell a newly dx'd
> MSer about the crippling effects of MS?
....
>
> i know a lot of new MSers want to know the numbers.what is the
> percentage that DO go into wheelchairs,am i a candidate for one or not?
> will i end up with all my limbs paralized, what are the tell tale signs?
> now these are very good questions,but not questions anybody can really
> answer. ....the NMSS and the NMSF.the (NMSF) foundation has a more realistic
> report.they do not pull the punches as much as the NMSS but are not in
> my views harsh with the statistics. they are a organization that deals
> with ALTERNATIVE medicines as well as FDA approved meds.they are very
> good in explaining the benefits of both.they *also* show you how to use
> both together at times. ....
> ....sylvia had stated that this ng was lacking solid info.that the 'old
> guard' with knowledge had left due to all the non-medical traffic this
> group generates. ....
> so it all boils down to this.what do we tell the newly dx'd.there is no
> NG guidelines to follow here.....
I have guidelines. I use them every day I work. You tell them what
they want to know. Get em talking and they will tell you what they
need. Problem is, with a news group or list, everyone wants to know
something different. There are folks with all levels of disability.
But even some of the most disabled are just running into some of the
simple problems.
I disagree, obviously, that ALL of the folks with technical knowledge of
MS have disappeared. Each of us has gone through *something*. I read
lots of posts with correct info. And then there are some with incorrect
info. What you read yesterday may be obsolete today. Everyone should
check out anything they read anywhere with at least one other source
totally different from the original one. If you saw it on the net, go
to the original article or a book or..... And vice versa.
Like the comment about the NMSS not being up on stuff like alternative
medicine. Actually, the recommended book is _The Honest Herbal_ by
Varro E. Tyler, PhD. Since this one, he has written more. Now the NMSS
has a pamphlet on diet, another on alternative medicine and a fact sheet
on alternative medicine.
This year, the NMSS took it's first official position on any particular
medication. That is the position on the ABCs. Over 50 years of
history, and that is the first time. They are only being consistent
with their set policy. The NMSS dispenses the info you ask for but you
must ask for the papers on RESEARCH. They will not dispense any info
that has not been checked out as much as possible.
As to what info should be dispensed to newly diagnosed on the news
groups or lists.... Answer their questions. If they read the other
stuff, that is their choice. It's not cool to stop questions of old
hands facing something new.
So what the hell is this group all about?
Information
Love
Support
Making friends
Caring
Fun
Sharing good stuff and bad in our lives
And a whole mess of other stuff
L
John van Veen
>
> Patti, on the new meds, and with a watchfull eye on your health, I dont see
> any reason why you shouldnt live forever. me either. But by delaying
> treatment of the apropo type you can get yourself into hot water.
>
Well lets see, do the new meds actually do
anything?
Denise has had MS for some 37 years now. She
is in a wheelchair. She avoids medications.
She game plan is exercise and movement. It
seems to be working. As long as she is
stable she can gain ground.
She has tried the different treatments as
they came and went. The only ones that
really helped her was a cortisone injection
on the optic nerve when she had ON, and
Tegretol for trigeminal neuralgia.
The medical professions likes miracle drugs
and pills because they save time. They let
those who benefit most from your malady to
get on to the next case. The wonder drug
doesn't require thought, it just requires 10
seconds of writing. (Everyone knows that
antibiotics are over prescribed, and they
keep on bding over prescribed.)
There has been great progress in medical
technology in the last 100 years. But the
art of healing and nursing has gone by the
wayside. Those who spend the most time with
the ill are the least educated and poorest
paid. Those who have the knowledge and
education to help the ill find that their
time is too valuable to be spent with one
sick person.
Folks, the medical profession is one sick
puppy.
John the houseboy
John van Veen
> See, like I said, I have Chronic Progressive and my neuro won't
> support any of these treatments for CP (or PP).
> Baclofen and (whatever that new muscle relaxant is) put me
> in a wheelchair and I never knew what hit me till I forgot to
> take it for a few days. Since, I wouldn't touch it w/10 ft pole.
> Amantadine and Cylert didn't do diddly for me; it was a waste
> of time and money taking them.
>
Denise maintains that Baclofen is what put
her in the wheel chair. I maintain that it
dam near killed her. She was semicomatose
for a very long time. I thought it was the
MS, but I was very wrong. When she stopped
the Baclophen, she got a lot better, her
condition dramatically improved, she quit
drooling, she became interested in sex again,
it was amazing.
Drugs suck. There is no cure. If you stop
paying drug companies for that which does not
work they will come up with something else.
Make the bastards earn their money the hard
way. Make them do their job right. The same
goes for doctors.
John the houseboy
John van Veen
> >What are these stats you keep referring to? Who compiled them and by
> >what means?
>
> ignore the MS orgs. I'll get the stuff so that what I said leaves the realm
> of opinion and becomes accepted knowladge. As soon as I find it.
>
> Rob
So, where do the come from. The question
posed by Helen stands.
John the houseboy
John O'Brien
John van Veen wrote in message <366122B9...@worldnet.att.net>...
>MS, but I was very wrong. When she stopped
>the Baclophen, she got a lot better, her
>condition dramatically improved, she quit
>drooling, she became interested in sex again,
Bravo; thanks for speaking up.
The anti-depressants also "kill" desire for
sex, which is why I don't take them anymore.
I do take Viagra, though. It and Hydergine are
my only drugs. The Hydergine is for improved
cognitive abilities.
John
LaVonne Murphy
> There has been great progress in medical
> technology in the last 100 years. But the
> art of healing and nursing has gone by the
> wayside. Those who spend the most time with
> the ill are the least educated and poorest
> paid. Those who have the knowledge and
> education to help the ill find that their
> time is too valuable to be spent with one
> sick person.
>
> Folks, the medical profession is one sick
> puppy.
I agree for the most part. But I will defend the nursing profession.
One of the problems is that there are not enough nurses to go around.
The docs and hospitals hire as few as possible to do the work. And LOTS
of nurses are finding other ways to use their knowledge. They do stuff
like home health, teaching, school nursing etc. Some get out of nursing
entirely though their heart may still be there. The stress is horrible
in hospital work because the folks there are sicker than they used to be
(generally) and the work is more intense. But, if anything, hospitals
are decreasing staff.
One of the best folks you can see is a nurse practioner. They take the
time to do whatever is needed. If you need to see a doc, he/she goes to
get them and you see them immediately, usually. Nurse practioners don't
pack so many people in their appt. book so they can allow more time for
you.
L
Marianne Braun
>
> hey gang,
>
> i read Robs post yesterday and said to myself,yes most of this i new
> from deduction or have read before. i have said and posted much the same
good. I guess I am still a newbie having been dx'd about 2 yrs. ago,
although I am in my 50's. My brother has had MS for over 20 yrs. and I
have watched him go from playing raquet ball to finally this last yr. a
wheelchair. He has not had all of the problems that many have had but he
has certainly had a lot. He has taken betaseron and then quit it. He
went through a period of depression recently over a new treatment that
was only a glimmer on the horizon. Even though I do not have any really
debilitating symptoms and have watched him slowly deteriorate I still
get extremely apprehensive. Thanks for handling this important question
with such insight and compassion.
Marianne the gardener
st...@tropheus.demon.co.uk
>
>They are the latest current statistics. If you guys want serious info then
>ignore the MS orgs. I'll get the stuff so that what I said leaves the realm
>of opinion and becomes accepted knowladge. As soon as I find it.
Where are you looking ? Perhaps we can help you re-discover them. Many
others will have access to the same information.
Steve
--
Stephen Wolstenholme
Neural Network Shareware
http://www.tropheus.demon.co.uk
Eagle Way2
Your statistics are far closer to the truth than what Tom was told.
This note is just so no one thought it was I who had written the "confused"
note. I know you just hit "reply" on my response to Tom, but my answeer is
repeated below...
Best,
Judith
>>The quote here is backwards. Only about 25% end using a wheelchair, and 75%
do not have to use a chair.<<
Brian
Eagle Way2 wrote in message <19981122135958...@ng73.aol.com>..."the
claim is now that 75% of all persons with MS end up in wheelchairs. If this is
true I am really bummed out. "
>Tom,
---------my response, below-------
Tom,
That's nonsense. It's no where *near that high a percentage. Interferons
(good or bad) bad) have *nothing to do with how many people will progress to
any stage.
You have every right to be confused though, there is as much WRONG information
on the internet as there is right. No one is really "lying"... (unless they're
trying to sell you something)... But *everyone has there own dr.s and their
own perspectives as to the course of this disease.
We are all different, of course...and no one can predict the course it will
take with any individual, but please don't worry about erroneous "statistics"
you may run accross.
If you can talk to your doc about your concerns, then do so. If you can't,
then try to find a neuro who specializes in MS, AND who knows how to
communicate with her/his patients!!
Just live your life one day at a time and live every day to its fullest... No
time to be bummed out, now!! <smile>
All the best,
Judith
SYLV77
You wrote:
<<these days,with MRI's and spinal taps,a
dx is usually made while the person is still walking,working,and has a
normal life!>>
Yeah, that was me nearly 14 years ago. I enjoyed 8 years of nearly complete
remission, too. I have a cousin with MS who told my mother, "She doesn't know
what she has! She doesn't know what's going to happen to her!"
Well, yes and no. I feared what could happen, but I wasn't going to live my
life in a cloud of doom either (well, except for the Bauhaus recordings and the
black clothing! <g>)
I would tell any people new to this game we're in: enjoy what you have. Live
as healthy as you can. And statistics are screwy. Ten years ago nobody knew I
had MS, so I wouldn't have been counted. Who knows where these numbers are
coming from, really.
My outlook on MS? Well, the natural life span of human beings is about 40
years, right? In Shakespeare's time, I would have been an old lady. So, every
month I get past my 40th birthday is a gift from modern advances. Not only the
MS meds I take, but sanitation, vaccines, and antibiotics and all the other
knowledge they didn't have until late in this millennium.
Take it easy, but take it!
Sylvia
Helen Williams
from "Patti" <Pepp...@prodigy.net> contains these words:
>re registered on Dixie and Ron's map, what is everyone else up to... or are
> they incapacitated so they can't even chat online here...
> It is all very overwhelming.
> Still hoping for the best though scared as shxt.
> Hugs,
> Patti
Hi Patti,
No, I don't think this is the reason why they are not online -
certainly not in the UK at any rate. Only a small proportion of pwms
here have internet facilities; no facts to back this statement up,
just my observation from what I see going on around me. The cost of
telephone calls over here is one factor for sure.
MS is unpredictable and yes, it's scary as hell if you think about it
too deeply. It is also true that there is no cure for it as yet, and
that there are few answers to our questions about outcomes etc.
However, IMO it's very unpredictability is its saviour. This means
that unless one is in a very advanced stage, there is always hope for
a better day/week/month/year tomorrow. My motto is hope for the
best, plan for the worst, and in the meantime look after your overall
health as best you can, without paying too much attention to
statistics along the way.
There are lots of other Western diseases which are equally
devastating - cancer, heart disease, Parkinson's to name but a few.
If one doesn't get you another b....r probably will (vbg). Mind you,
it is easy for me to say this because I have had the best part of my
life, and my children are all grown and living their own independent
lives. I appreciate how hard it must be for you in your situation
and stage of life.
Very best wishes,
Helen W:)
Helen Williams
from "rob" <22rdu...@idt.net> contains these words:
>
> I dont like the conflict generated by my posts. seriously. But the
> alternative... to sit tight with pursed lips while I see someone damaging
> their future, is even less "likable".
Rob,
Every one of us has the right to manage their symptoms in whatever
way they see fit. I find your implication that we are not capable of
making our own choices and decisions quite insulting. Hey, you're
not a neuro in disguise are you (vbg)?
Helen W:(
Eagle Way2
back."
They also do not include the *vast majority of PWMS who
1.) have never been polled in their life
2.) Are too busy working and living a productive life to care
3.) Have never been diagnosed
4.) Have symptoms that are totally "invisible" to anyone who looks (which
would include no use of assistive devices.)
*Not to minimize those who truly have the more aggressive form of MS... There
are far too many. ONE would be far too many, but "scare" statistics are
certainly not the answer.
I'm always amused by "statistics" about *anything I have personally encountered
or experienced in 54 years... I wonder when anyone will ask *me... I've
never been "polled", "studied" or had any of my "personal stats" reviewed by
any person or institution. Nor has *anyone I've met. And, I've offered and
even answered requests for "participants".
I'd venture a guess that less than 10% of the people here have either! Even
*including those who have been/are on any medication/treatment trials in that
10%...
"Research shows......................" is a very loose term, since we all know
ANY research can be adjusted to fit the personal/particular needs of the
researcher, drug manufacturer or other interested party.
>>It scares me worse when someone who is smart and knows better touts their
particular theory to this group. How can they do that?<<
I agree to an extent, Rob. However, everyone has the right to make their own
decisions, mistakes and choices. Which one of *us has the right to decide for
others what "particular theory" is or is not "worthless" or "proper"? It's a
purely personal decision.
You're right that there are thousands of opinions and theories being touted
about *everything...on the internet, newspapers, TV, even research journals...
We all have our OWN choices to make.
That's how we learn all lessons in life... What works for *one person may not
work for 10,000 people. Conversely (as in my own case), much of what appears
to work for "thousands" of others has either proven useless or harmful to my
own very individual body, etc...
Best,
Judith
"The sooner we realize our responsibility for our own lives,
the sooner we can enter a new way of living."
Jonas Salk
Eagle Way2
Re: BVT, I know of only one case, personally. A friend of mine for 30 years,
and after surgeries and years of traditional therapies *has actually had relief
from crippling arthritis, over the last 2 years. I know of one other person
with the same results...but I speak about no one whose history and day to day
battles I have not personally observed.
Me? I would be hesitant about BVT for myself, but for purely personal medical
reasons.
Judith
Eagle Way2
people with MS.<<
AMEN!, John!!
John O'Brien
Helen Williams wrote in message <199811292...@zetnet.co.uk>...
>Rob,
>Every one of us has the right to manage their symptoms in whatever
>way they see fit. I find your implication that we are not capable of
>making our own choices and decisions quite insulting. Hey, you're
>not a neuro in disguise are you (vbg)?>Helen W:(
>
are of above average intelligence and are looking for answers to
questions that often they can not even formulate without the info
people here dispense.
Some of us who have had some success with recovery from the
MS symptoms want to share what has helped us and we have
absolutely NO ulterior motives( Like Money)
Many people criticize Cari Loder for her attempts at making
money from her discovery. When I first found out about it
several years ago I wanted to try it so I called Cari and talked
with her and found her very sweet and generous with the
info. Later she had to guard it due to patent concerns and
I was basically not able to use it because the Anti-Depressant
is not available in US but I still use the B-12 injections and
feel good effects from them.
It's taken me years to dig my way out of the dung heap and
I still haven't reached the top, but I do have some breathing
room now-a-days. Thanks to good choices I've made.
John
Lin
> time to do whatever is needed. If you need to see a doc, he/she goes to
> get them and you see them immediately, usually. Nurse practioners don't
> pack so many people in their appt. book so they can allow more time for
> you.
I'll agree w/ that one!! Mellen Center/Cleveland Clinic uses nurse
practitioners, & not only does it take some of the load off the dr, it
also is a good link between you & your dr, & the ones I've come across
bend over backwards for the patient!!
Too bad more places don't have them, though...
Lin
LisalisaA
and uncited statistics. i wont do it again, however i will join in requesting
the citations for your information.
>rob wrote:
>>
>> Helen Williams wrote in message <199811290...@zetnet.co.uk>...
>> >Rob,
>> >What are these stats you keep referring to? Who compiled them and by
>> >what means?
>>
>> They are the latest current statistics. If you guys want serious info then
>> ignore the MS orgs. I'll get the stuff so that what I said leaves the
>realm
>> of opinion and becomes accepted knowladge. As soon as I find it.
>>
>snip
>
>> Rob
>
>So, where do the come from. The question
>posed by Helen stands.
>
>John the houseboy
>
@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@
Be Well,
Lisa
Lisa...@aol.com
"Please explain to me the scientific nature of 'The Whammy'" - Agent Scully
@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@
John Smith
I would not be so sure about your details not being incorporated in stats
somewhere.If you have car insurance,medical insurance,house insurance,have
been to hospital,seen a neuro or GP,had any treatments which required your
details,have a bank account,have a credit card,ever contributed to the
Church of Scientology....etc,etc.then your details are included in stats,and
it is probable that cross correlation's have been made between at least two
of these entities.Sure, the freedom of information act protects us from all
that.......my ar.e!,if the records are held offshore on some server is say
The Cayman Islands,then even if you knew the person to ask,legally they
could tell you to take a hike.I know of some people in the medical world and
they are surprised at how poor the security is on medical databases.Doctors
frequently access the hospital databases from home via un-secured links,and
they often browse records and medical files.
Many docs in the US now send their billing and record maintenance clerical
work to places as remote as India to have them compiled for the next days
office opening.
As far as stats are concerned they are as powerful or as weak as the
designer intended.In the previously mentioned case, the definition of
wheelchair user is as vague as it gets.A simple question like "Do you or
have you ever HAD to use a wheelchair ?"might be the question asked for the
compilation of the wheelchair users figure.I once had to use a
wheelchair......when I was 10 in a day clinic.It was more to do with
protecting the hospitals insurance from an accidental fall by a limping
patient,than any necessity on my part.I HAD to use it by insistence of the
nurse,not by any real necessity.
As I mentioned here before,when I worked using stats for product
distribution purposes,we had a half joking/ half serious question which went
"What do you want the figures to say?".And some organisations use stats with
this approach as the golden rule.Design the questions to produce the
required statistics,and make the case.
Regds Sean
Irene LaVergne
>
> dear Rob..
>
> I apologize for assailing you with this, I guess it all just got too much
> for me after reading that.
>
> I had 2 "attacks" in 4 1/2months so I already know what my future holds for
> me, so the reality of what could be hit me so hard... it was MY fault for
> not bein strong enough to face it... being a single mom with an sob ex
> doesn't help matters either... so I guess I over reacted.
>
> That plus my doc wants to switch me already to the copaxone from the avonex
> since I did have these exacerbations so swiftly... then, this trigeminal
> neuralgia hit and I just fell to pieces.
>
> I have often wondered, if there are 300,000 of us with MS, maybe 300 or so
> they incapacitated so they can't even chat online here...
> It is all very overwhelming.
>
> Still hoping for the best though scared as shxt.
> Hugs,
> Patti
Believe it or not, there are some people who don't have computers! LOL
Or they may be so busy with their work, families, or whatever that they
don't get around to chat groups, support groups, etc. Or they're
running marathons and competing in Iron Man competitions. Or they're
famous people who choose to be ananymous. Or they don't speak English.
Or...Find other reasons other than being incapacitated.
I recognize that we may become wheelchair-bound, but we may not. Even
though the odds "favor" being non-ambulatory, you can use that
information to your advantage. Do what you can now to build strength,
and get as healthy as you can, get good insurance and investigate
long-term care insurance, be sure you have people in your life who will
stand by you, have people in your life who can help look after you,
communicate your wishes about treatment, teach your loved ones about
your illness, meds., etc. These are things we all should do, because
most of us will need help at some time or another, and besides
cultivating relationships with people who know you and care about you
makes the intervening days better than tolerable.
Irene
Irene LaVergne
Even jello can be tough. Have you ever seen jello that has been
sitting out for a while? It might wobble a bit, but it's got a tough
outer covering and holds its shape very well. So maybe you need to give
yourself some time, and you'll hold your own. Use your time to get
information to make some contingency plans, and to grieve for your loss.
Your kids also need to learn from you how to experience a loss, to feel
that pain, and still have hope and determination to go on. That's what
resiliency comes from. To just "buck up" is very difficult to do, but
to cry out your grief, yell out your anger, and express your
disappointment will help you to bolster your resolve to keep on, and to
face each change as it comes. Tell people about your grief and fears
and accept whatever help they have to offer. It takes strength to show
your vulnerablity and to get appropriate help. Take care and hope you
feel better soon.
Irene
LisalisaA
the info being quoted here. i recognize i might be trying to look at this all
thru rose colored glasses. that is my nature...to be positive...but please,
someone tell me where these odds and stats saying that we are all going to be
in wheel chairs or non ambulatory come from...all the research i have done says
just the opposite, that 20 years after dx two-thirds of us are still mobile tho
might need a cane or walker 30 percent of the time...
so if anyone of you guys who say those stats are wrong could please tell me
what references you are citing, i will happily shut up and go read the books...
thanks.
irene wrote:
>I recognize that we may become wheelchair-bound, but we may not. Even
>though the odds "favor" being non-ambulatory, you can use that
>information to your advantage.
mike the webman
>
> I have guidelines. I use them every day I work. You tell them what
> they want to know. Get em talking and they will tell you what they
> need. Problem is, with a news group or list, everyone wants to know
> something different. There are folks with all levels of disability.
> But even some of the most disabled are just running into some of the
> simple problems.
>
utensils for extreme handicaps is brought up it's as a helpful way to
overcome it rather than a depressed rant about being useless.
> I disagree, obviously, that ALL of the folks with technical knowledge of
> MS have disappeared. Each of us has gone through *something*. I read
> lots of posts with correct info. And then there are some with incorrect
> info. What you read yesterday may be obsolete today. Everyone should
> check out anything they read anywhere with at least one other source
> totally different from the original one. If you saw it on the net, go
> to the original article or a book or..... And vice versa.
>
VERY WELL PUT! i never did say that all the 'experts' had left.we have
many of them still here from a few years ago.some are silent and just
reading now and then due to advanced problems and the amount of posts in
the NG.then there are those like Barbara Barton in the UK that is in the
middle of renovating her house and garden,WHAY TO GO BARB! others like
yourself that did not answer posts as fully as you did a while back have
come into your own now. i understand this,i sometimes took a backseat to
others that responded before me.why reiterate something already said! we
really do not need a ton of *ME TOO!* reply's following a good post and
a excellent reply.
> Like the comment about the NMSS not being up on stuff like alternative
> medicine. Actually, the recommended book is _The Honest Herbal_ by
> Varro E. Tyler, PhD. Since this one, he has written more. Now the NMSS
> has a pamphlet on diet, another on alternative medicine and a fact sheet
> on alternative medicine.
>
VONNIE, this is good news! i was unaware of the NMSS change.it has been
over a 18 months since i have ventured into a MS chapter.i will go and
check out the new booklets.i want to bring a old w/c to them anyway.they
may have someone that can use it. :-)
thats another thing,for this group to remember.i may have slammed the
NATIONAL MULTIPLE SCLEROSIS SOCIETY for the lack of Hard Facts i was
looking for,but i never said they where a bad organization.i have told
countless people to go and see them for information as well as support
groups and material. they FREELY give out material
like,WHEELCHAIRS,SHOWER SEATS,CANES,LIFT CHAIRS,AND OTHER NEAT STUFF.
your MS chapter may be smaller than mine,i live in a large city with a
healthy tax base,but they all get donations from families who upgrade to
a newer lift chair and donate the old one to the ms chapter,some donate
when a loved one dies.i even saw dozens of new in box stuff that they
had! i had my biggest uplift at the MS chapter,when they opened the
storage room door and i walked in! it was literally X-MAS in JULY! they
just said "take anything you need" and "did you bring a truck?" <grin>
<true lines too!>
the society also forms new support groups every few months if they have
enough people interested,so if your a newly dx'd MSer theres a new one
you can jump into with others that are just joining.that way you get to
meet new friends with the same problems IN YOUR AREA! those friendships
are sometimes the best.
> This year, the NMSS took it's first official position on any particular
> medication. That is the position on the ABCs. Over 50 years of
> history, and that is the first time. They are only being consistent
> with their set policy. The NMSS dispenses the info you ask for but you
> must ask for the papers on RESEARCH. They will not dispense any info
> that has not been checked out as much as possible.
Vonnie,is this just for drugs,or are you talking about information in
general.i used to be able to just walk into the chapter and hand pick
from tons of large racks all the pamphlets i wanted.are they now handing
them out on a need to know basis?
>
> As to what info should be dispensed to newly diagnosed on the news
> groups or lists.... Answer their questions. If they read the other
> stuff, that is their choice. It's not cool to stop questions of old
> hands facing something new.
i agree! the older folks with advanced problems will ask the question
with class.they wont just blurt out something stupid like "LIFE SUCKS,i
want to die my left arm just became dead meat!" so any discussions that
comes from that will be usefull,have some levity in it,and probably a
good way for nubies to learn.i remember a thread on wheelchairs (w/c)
that was very informative,we went into the van and lift units as well.
>
> So what the hell is this group all about?
> Information
> Love
> Support
> Making friends
> Caring
> Fun
> Sharing good stuff and bad in our lives
> And a whole mess of other stuff
you have that right.i woke up early today.like 3am (ok,so that's normal
for me) and the first thing i did was check e-mail and them log onto
this NG.it's now 5:48am and im on my 2nd cup of coffee and responding to
the posts i saw.i also plan to call a friend today (another state)from
this NG.with todays long distant phone rates of ten or nine cents a
minute and 5 cents on weekends,it is very economical to keep in touch
with friends made through this group.
mike
--
dealing with MS can sometimes feel like eating JELL-O with chopsticks!
anti-spam in effect
to reply: webm...@bellsouth.net
Rene
>with this, how the heck are they supposed to be?
If you do the best you can, I believe your kids will not only
understand but even gain strength for their lives.
>I got a card today from
>the gals at work, one wrote to me to be strong... hard as heck when I feel
>like a piece of jello mold, all wobbly in the legs (and head lately too).
Yes, I know. How can one be strong with a couple of nice MS
symptoms. Almost impossible, especially with cognitive symptoms.
I often asked myself what I would say to someone diagnosed with MS,
if I didn't have it myself. I simply don't know. The only thing I
learned is to never mention it at parties. There's no better way of
ruining the atmos in an instant.
The remark I liked best after my dx came from my general physician.
He just said: "Shit, isn't it?" That sums it up pretty well.
Anyway, we got to carry on with our lives as good as we can, one way
or another. Nobody said it would be easy.
Bye,
Rene
Kate Murphy
>Absolutely. The closest the public has come to seeing a really bad case is
>Annette Funicello. (and she would probably be in a nursing home if she didn't
>have the means for 24 hr a day care).
I have seen Annette moving -- with difficulty, to be sure -- and heard
her speech. Frankly, her disease compares about to mine. I don't
think either of us need to be in a nursing home, means or no.
I think the myth of masses of MS people in nursing homes is just that.
75% of people with MS are ambulatory, some with canes or crutches.
Certainly this is not benign, but it is a much more hopeful view than
you are painting.
There are relatively mild cases. My sister has been diagnosed for
about 10 years. She works full-time, coaches a swimming team, and
teaches swimming and health at a college. She also cares for her
daughter who has had a liver transplant and has lymphoma.
I worked for 15 years past diagnosis, now use a wheelchair and have
significant speech and fatigue problems. However, I don't see a
nursing home on the horizon at all.
We need to be both accurate and positive.
Kate
Kate Murphy
wrote:
>The wonder drug
>doesn't require thought, it just requires 10
>seconds of writing.
>There has been great progress in medical
>technology in the last 100 years. But the
>art of healing and nursing has gone by the
>wayside.
John,
This is so right and so important. Much of what helps in MS in the
long run is not the $1000 drugs, but the nurse who turns and cares for
a bedbound person, the physical therapist who gets someone up on their
feet and walking with crutches, the psychologist or social worker who
sets up a plan to keep active or working.
Avoiding depression and hopelessness and staying active are critical
to living with MS. I'm not sure where the medical resources for these
activities are.
Kate
mike the webman
> Bravo; thanks for speaking up.
> The anti-depressants also "kill" desire for
> sex, which is why I don't take them anymore.
>
> I do take Viagra, though. It and Hydergine are
> my only drugs. The Hydergine is for improved
> cognitive abilities.
> John
john,
just so you know,they make so many anti-depressants these days,some
wont cause impotency and other side effects you may have experienced.you
just have to experiment with a few till you find the right
one.depression causes more pain that some straight forward tangable
problems like even arthritis! i would not let depression go unchecked
for any reason.
if for some reason you have found a real honest to g-d ALTERNATIVE way
to rid yourself of depression i take my hat off to you.but if others say
you still have it (we cant trust ourselfs to say we do not!) then i
would strongly recommend trying some other brands.i had a few that did
not take away the 'urge'. in fact on some,'JR.' did quite well.<grin>
i can see your a true "damn the torpedo's full speed ahead at any cost"
kinda guy, when it comes to NATURAL and ALTERNATIVE solutions to F.D.A.
drugs.i have no trouble with that because you are PPMS. just make sure
when you tout the benefits and tell people to stop using any and all fda
drugs it is YOUR OPINION.just telling them they are worthless is not
true.tell them that you have nothing to lose because your
PROGRESSIVE.the NEW readers here may have RRMS and if they do not take
the ABC drugs they will PROGRESS! it is true that only around 33-50% of
the ABC drug users get any benefit,but thats a hell of a lot than nobody
taking them!!!
i think after they have a firm grasp on all the problems and what can
happen to them,then ,if they want to go against the advice of the whole
medical community and go your path thats fine with me.i just think its
criminal without the proper disclaimers to tell people that baclofen is
worthless.thats just one med that DOES help my cramping and spasms.if it
does not work for some,there are a few other anit-spasm meds that may.
i am all for alternative meds.i have tried a few in the past and will
again when one seems promising.i just dont think one should dump
everything for them unless they are past all hope,like terminal cancer
patients,example:STEVE MCQUEEN when he tried controversial experimental
drugs in mexico before he passed away.
also a PPMS classification like your's and so many others have SHOULD
agressively go out and try alternatives.YOU have nothing to lose.
heres some food for thought about some of your improvements,(now
remember i am all for alternative drugs!) some things like PAIN may go
away when you go off a FDA drug and try a natural approach.the natural
rememdy may do nothing,it may just be a placebo.it may all be
mental,like a depression and you came out of it due to the fact your
trying something else! depression causes g-d knows how much of the pain
and exhaustion we suffer as MSers.so every advantage you think you get
from the alternatives MAY not be a direct benefit but just a change of
mental attitude.i am not going to go into a full psych101 lesson
here,besides i havent written a lesson plan for today! but what i have
said should have SOME ring of truth in it.
heres something to chew on. they now say that AVONEX and the other ABC
drugs are being perscibed to ALL MS patients. apparently they DO see
some improvement in many.the insurance companies would not have agreed
to cover the cost for the extra patients,as well as medicaid and
medicare if they did not see a benefit.they are all bean counters and
will go with the cheapest route! the only reason they would agree to a
$900 a month expense for ALL MSers is they see a savings down the road,s
in less DETERIORATION!that would translate into a direct saving of MONEY
they have to spend per patient.do we need a lesson in economics too?<g>
stay well,no flames please,intelligent conversation and views readly
accepted!
Eagle Way2
"I would not be so sure about your details not being incorporated in stats
somewhere.If you have car insurance,medical insurance,house insurance,have been
to hospital,seen a neuro or GP,had any treatments which required your
details,have a bank account,have a credit card,ever contributed to the Church
Sean,
I'm not sure what this has to do with research stats being compiled on
Multiple Sclerosis, which were the only "stats"/"theories" to which I was
referring.
Of *course, I know "Big Brother is Watching"... But that has to do with every
*other phase of life. A disquieting fact about life since the computer age
began!
All I was saying was that those categories I listed in my previous post werea
*few of those not taken into account in any MS "facts" or surveys, purported
to show that the majority of us would wind up in wheelchairs!...
Perhaps I was unclear. ;-/
Best, as always...
John O'Brien
mike the webman wrote in message <3662E3...@nights.com>...
(.... snip)
>>stay well,no flames please,intelligent conversation and views readly
>accepted!> mike
>--
Nothing to flame in that post. In reality, I rarely flame
until someone really irks me, then I can be one of
the best.
I try to stress that I have PPMS when I do an alternative
therapy post and always let people know what
discomforts and/or risks are involved.
As for Anti-depressants; I really don't think I need
them or want them anymore. I got good anti-depressant
relief from (here we go again) Kombuca mushroom tea.
Don't use it anymore, mostly because of the little tiny
fruit flys all over the place and the fermentation odor.
I can't help but believe that some of the things I have
had success with are just as applicable to RRMS as
to PP.
I don't know how many (for sure) suffer from
at least one set of their toes being frozen in a curled
up position. I did, and the bee stings freed them within
a couple weeks. I can wiggle my toes again. It seems
like a small thing but it really is an important part of
being able to walk and balance.
John
Eagle Way2
drugs are being perscibed to ALL MS patients. apparently they DO see
some improvement in many."
Hi again, Mike... ;-)
There is *one point that many seem to forget. As a PPMS person, even if I *did
wish to take one of the ABC drugs, I could *not.
I live on $680 a month *total income. (way too much to qualify for Medicaid
(says they)...and Medicare is the only health insurance I have). They do not
pay for Rx...and many other things.
(Not to mention the fact that I am sole caretaker for my father and cannot
afford any (ANY) more days of experiencing any more side effects from what *has
been rxed for me over the last 9 years. I *must be as mentally alert as I can
"fake".
It's all I can do to pay for my generic Valium, synthroid and OTC IBS drugs
and others.
I can only afford to take my several *vitamins every 3 days...and just saved
like hell to be able to "treat" myself to a 3 month supply of Neurontin! When
it's gone...it's gone!
Baclofen (and Elavil, etc...) was a real "killer" for me. That does NOT mean
I do not know that it helps many other people! I happen to be experiencing a
complete change in how my body responds to *many things, so it is a purely
personal reaction/response. *Everyone's body chemistry is completely
different.
I feel the same way about those who say "You *must go on an ABC drug", as you
probably do about those who are opposed to it. Hopefully, people will come
here, and read *all the posts about their particular concern, and then ....
Disregard it all, and work with their own doctors at finding what works for
them!
>>so every advantage you think you get from the alternatives MAY not be a
direct benefit but just a change of mental attitude.<<
The same may also be said of any allopathic AMA/FDA approved drug, Mike! The
mind is a powerful thing. ALL of our meds, moods, good days, bad days are
equally effected by our mental outlook.
Don't forget, sometimes the FDA drugs may work just as much as "placebos" for
people as "natural drugs". In fact, having been prescribed something by a
*doctor* has a great psychological effect on many as well.
I just believe that holistic, allopathic and all methods of medicine were meant
to work together! IOW, when I break my wrist, I go to a surgeon. I see my MD
regularly and discuss various possibly affordable treatments. (some
traditional, some not) I try diet, and many other things that seem to make me
feel better. When they don't, I stop them.
>>stay well,no flames please,intelligent conversation and views readly
accepted!<<
Okay, my friend... I trust I have complied with your parameters!! <smile>
Judith
John O'Brien
> i can see your a true "damn the torpedo's full speed ahead at any
cost"
>kinda guy, when it comes to NATURAL and ALTERNATIVE solutions to
F.D.A.
Actually, I do need to take one exception to your post.
What you say above is far from accurate.
I very carefully gather as much information about a certain therapy
and very carefully assess whether or not to try it.
For example; The Bee Sting Therapy (of course) I actually have
known about and had a large amount of info about it, for at least
four Years before I actually started doing it. So, a very definitive
NO, I do not go "Damn the Torpedoes ....." at all
John
John Smith
sorry for the confusion there,but on the wheelchair issue ,my misreading of
the text.I thought I posted a second item on that regarding the importance
of the exact definition of "wheelchair user"........cant remember right now.
Regds Sean
Ann Savich
Ann :-)
rob
>her speech. Frankly, her disease compares about to mine. I don't
>think either of us need to be in a nursing home, means or no.
>
So tell me, with no income, and whatever it is people make on SSI or SSDI or
whatever it is, how is she going to stay OUT of a nursing home or a gov
assisted living project. I am seriously curious. It just doesnt seem
possible.
>I think the myth of masses of MS people in nursing homes is just that.
>75% of people with MS are ambulatory, some with canes or crutches.
Now its my turn to ask where did you get your figures? The scientific
studies show that over 50% are "confined" (whatever that means) to wheel
chairs whithin 15 yrs of diagnosis.
>Certainly this is not benign, but it is a much more hopeful view than
>you are painting.
>
>There are relatively mild cases. My sister has been diagnosed for
>about 10 years. She works full-time, coaches a swimming team, and
>teaches swimming and health at a college. She also cares for her
>daughter who has had a liver transplant and has lymphoma.
>
Sounds about par for the course.
>I worked for 15 years past diagnosis, now use a wheelchair and have
>significant speech and fatigue problems.
Sounds about par for the course.
>However, I don't see a
>nursing home on the horizon at all.
>
You must be married to a wonderful man with a good job.
>We need to be both accurate and positive.
>
>Kate
I couldnt agree more.
Rob
rob
John O'Brien wrote
>So, a very definitive
>NO, I do not go "Damn the Torpedoes ....." at all
>
>John
>
I dont think that He nmeant it in a foolhearty way. rather that you were
brave in confronting your disease. Whatever.
I have been thinking about this beesting (BS in my mind) stuff. I have
thought of something. Tell me what you think.
The brain releases endorphins in responce to both pain and chems. Maybe the
endorphins released as a result of the sting effect your perception of the
severity of the disease? Or Maybe in a certain sub-groups the endorphins
alters your cytokine profile and that helps in your disease.
So that in a large study group the people who are helped by beestings is
smothered by the groups who either dont respond or who are maybe damged a
bit by the "pain" and "trauma" of the sting? Am I making sence?
I am wondering if its not the actual chem makeup of the sting but the actual
getting "stung" and the pain of the sting that helps.
I am not saying that you are a masochist or a nutcase but rather am offering
a week theory on why it "may" work on "some" people.
It would be interesting to study a self selected group of beesting fans.
And then compare them to long term ABC controls.
Lord knows that you guys are confident in you aproach. ;^)
Rob
Helen Williams
from "rob" <22rdu...@idt.net> contains these words:
> Now its my turn to ask where did you get your figures? The scientific
> studies show that over 50% are "confined" (whatever that means) to wheel
> chairs whithin 15 yrs of diagnosis.
>
Rob, I am asking again - where are you getting these figures from?
Just saying "the scientific studies show" isn't enough if you are
going to quote figures. I don't want you to quote the whole
caboodle, just give references so that people (namely me) can look
the research up if they want to. It is particularly important that
you do this because your figures fly in the face of everything we are
being told elsewhere. If the wool is being pulled by the MSS and the
medical fraternity I want to be able to judge for myself.
If you think I am having a pop at you, I am not - just want to know
the basis of your statements. Thanks.
Helen W:)
John O'Brien
rob <22rdu...@idt.net> wrote in message
<740e3u$c...@nnrp2.farm.idt.net>...
>>I dont think that He nmeant it in a foolhearty way. rather that you
were
>brave in confronting your disease. Whatever.
>
others here may "think" that I was "that way" and I do not want
to be perceived as such because it is not true at all.
>I have been thinking about this beesting (BS in my mind) stuff. I
have
>thought of something. Tell me what you think.
>>The brain releases endorphins in responce to both pain and chems.
Maybe the
>endorphins released as a result of the sting effect your perception of
the
(snip.......)
>Lord knows that you guys are confident in you aproach. ;^)>>Rob
>
This brings to mind the "Star Trek" episode so many years ago
about the trial involving Spock and the crippled Starship captain,
who I don't remember the name of, being taken to a "forbidden"
planet inhabitted by people who practice mind control.
Anyhow, medicine had no hope for the captain, he was
paralyzed, mute, a basic "basket" case. The end result was
he was permitted to live out his years under the control of
these people who caused him to perceive himself as
able-bodied and who obviously perceived him also as such.
So, if all perceive you as able bodied and you also perceive
yourself as such, are you not able-bodied?
This story is actually not the truth as far as the bee stings go.
Since what you are thinking about has some validitiy, but
you a re not reading all the available literature and stuff
published on the websites, which go into some detail about
the effects of the venom. Contrary to your perception of
the actual stings and pain involved, the pain is fairly
minimal and extremely transitory. (except on eyebrows and
top of head - they hurt more and last a bit longer).
The inital "sting" pain turns to a warmth in about 15-30
seconds and the energy associated with the venom is
tied to (I think) a cortisone like, release which is why
Vitamin C is needed to form the cortisone. And which is
why it is NOT a good idea to get stung in the evening.
Sleeping is important to energy also and sleeping is a
bit tough when one is super-charged.
Thanks for your thoughtful post?
John
>
ed hill
rob, i have to second helen's request.
while we all have a right to voice our opinions. you are repeatedly
posting very negative stuff as fact without providing any references to
your sources of info.
i've never seen any studies claiming to state a time to "non ambulatory"
condition in MS after DX. even if there is, that means the folks discussed
were DX'd a long time ago in a very different medical environment.
you perspectives may be quite valuable. but without providing some
documentation of your assertions you render your "statements of fact"
worthless. and given their negative nature, quite harmful.
some time back you refuted my post about possible hazards inherent in
exogenous growth factors. you post was simply wrong. even a cursory look
at the literature would have precluded your making the claims you did.
please see my post regarding "growth factors and cancer" for a more
complete and well documented view of what i'm saying.
at this point this is a discussion. please don't start a flame war. like i
said, your perspectives are valuable. but without documentation they seem
to be something else entirely.
best wishes
ed
--
-----------------------------------------------------------------------
"The whole business of his life was in the plunder of his gaze..."
LisalisaA
i too would like to once again second helen's request. as i stated before, i
will not jump in your face about this again rob. however you must realize that
refusing to cite these scientific studies is undermining your credibility. you
seem to be claiming that EVERYONE is lying to us and you are the one with the
truth. if that's true, i want to be able to read these studies or books or
whatever for myself.
i cant do that at the moment tho, because i have never come across the
literature you claim to be quoting. i cant judge whether it is outdated or
what. if your true purpose is to open people's eyes and provide the motivation
for them to save themselves, then you should be willing to cite your sources.
if you dont, you run the risk of becoming a mccarthy like caricature, waving
around some papers in your hand while screaming you have the proof while
refusing to let anyone examine it.
please post the cites, rob. there are a lot of intelligent people here who have
the energy and the desire to invest the time in examining your primary sources
and making informed decisions for ourselves.
we need the cites, rob.
thanks.
Eagle Way2
"So tell me, with no income, and whatever it is people make on SSI or SSDI or
whatever it is, how is she going to stay OUT of a nursing home or a gov
assisted living project. I am seriously curious. It just doesnt seem
possible.<<
Rob,
Not only did Annette make a **goodly** sum of money in 20+ years with Disney,
movies, commercials, etc... she also married fairly well (I believe). If not
financially, he is certainly a mainstay of personal support.
Whatever, her financial needs are well taken care of... She has all the paid
for round-the-clock care many of us would love to have... As well as a family
which has also done well from her own success.
Best,
Judith
Eagle Way2
The whole letter was great....with no attack implied on Rob at all!!
Judith
-------------------
Ed wrote:
while we all have a right to voice our pinions, you are repeatedly posting
Ron & Dixie
Avoiding depression and hopelessness and staying active are critical
to living with MS. I'm not sure where the medical resources for these
activities are.
Kate
Kate,
That is it in a nutshell. Whether you have a good doctor and treatment or
not, without a good attitude it's hard to go on. If you stay depressed
it's hard to climb out until a little light gets through the darkness. So
if possible, we all nee to try to be a light for someone else! Who knows;
it might brighten your life too!
Cheers,
Dixie
rob
>Whatever, her financial needs are well taken care of... She has all the
paid
>for round-the-clock care many of us would love to have... As well as a
family
>which has also done well from her own success.
>
>Best,
>Judith
Once again I am the victim of my own poor typing. "I meant how on earth do
normal people who have MS stay out of the nursing homes." I am not familiar
with how much a person gets on SSI or SSDI. But it wouldnt seem to be
enough to live outside of somesort of gov sponcered housing or nursing home.
A person wh\ith no income other than the monthly check from the gov would
have to be a financial genius to stay out of one. At least it seams that
way to me. I could be wrong. It wouldnt be the first time. ;^)
Rob
rob
>we need the cites, rob.
>
>thanks.
> @@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@
>Be Well,
>Lisa
I should have kept the stats to myself eh? Me and my big mouth. Sigh, you
guys dont know what your asking of me. My life doesnt revolve around
medline, although at times I have felt like it does. So the info that I
have is the result of the studies themselves. Not the abstracts.
Which involves me getting off of my butt and getting into the attic, and
retyping them here.
Gosh you guys are so demanding. ;^)
Really though I have just been a bit busy and have only had time to pop in
on the net for a few mins at a time. I'll get the stuff and post the
relevant info.
Well "busy and 'lazy'".
Rob
Grunt
rob <22rdu...@idt.net> wrote in message <7428q7$r...@nnrp2.farm.idt.net>...
hi Rob,
You certainly do come up with some interesting remarks- many of which I just
don't know what to make of...
Most of the people I know with MS aren't wealthy, but you are correct in
supposing that we must be geniuses. (smile)
Some have been fortunate enough to have worked long enough to collect a
pension. SSDI can pay up to about $1400 a month, I think, if one has
worked. Some of us have help from family- immediate or extended. There are
any number of creative living situations. It can be tough, alright. But
living might not be as expensive as you suppose. Those who get SSI can
qualify for other aid- like caregivers if needed, I think. And yes, there's
subsidized housing, which isn't bad.
I haven't quite grasped who you are or where you're coming from, but you
sure seem an interesting character. (smile) There are many of us
(interesting characters) here.
jan g
>(snip Judith's reply here)
rob
ed hill wrote in message ...
>
>i work from full texts too rob.
>
>but the way i get full texts is by doing searches that involve
>abstracts. or if you actually have the journels you can still log into
>medline for the abstracts. cut and past them into your posts just like
>the rest of us do.
>
>it's really the only way to maintain any credibility.
>
Credibility? Has that ever been an issue with me? Dont think so. And just
FYI, not all studies are on medline. Not that these wouldnt be. I just
wouldnt want to have anybody think that medline is the final ultimate
authority. Its the best we have. But not perfect.
What irks me about medline is that when I happen to run across something
that is VERY interesting it doesnt even have the abstract. Argh... ;^)
You say you have run across information contradictory to mine?! Thats
wonderfull news. I wasnt aware of any studies other than the ones I have.
Please share.
Rob
ed hill
i work from full texts too rob.
but the way i get full texts is by doing searches that involve
abstracts. or if you actually have the journels you can still log into
medline for the abstracts. cut and past them into your posts just like
the rest of us do.
it's really the only way to maintain any credibility.
try as i might i've been unable to find any studies backing your
rather upsetting assertions. so i've had to post what i've found on those
subjects which to my dismay said quite the opposite from what you stated
as true.
what was even more upsetting to me was the amazing volume of research that
inexplicably disagreed with your assertions.
please help me understand this. i'm at a loss as to how i might reconcile
the difference between what i see in your posts and the stuff in JAMA and
the Journal of Neurology and other such rags.
now merely citing one credible source alone would be what logicians call
"appeal to authority" often a sign of a possible fallacy (as i'm sure you
know). but the volume of stuff against and seeming paucity of findings
backing what you say is very confusing to me.
please rob.
where are these studies you refer to. i mean other than your home.
warmest wishes
ed
"rob" <22rdu...@idt.net> writes:
>Rob
LisalisaA
right about jama and other journals publishing stuff in the past two years that
directly debunk what you are spouting. i have right here in front of me a stack
of articles sent to me by a friend who reports for american family physcian
magazine, who when i was dxed did a library search for me of all the major
journals. article after article, study after study, from the mayo clinic, from
jama, from the new england journal of medicine from the american neurological
journal, from the nmss from the ms foundation ALL say the same thing....things
are looking up for msers...life expectancy has never been greater....the odds
that you will stay ambulatory have never been greater....etc, etc, etc.
i dont know. perhaps i am just one of the sheep, or a jerk, as you once called
me, but i cannot believe that ALL these medical journals and two leading ms
charitable groups would be involved in some great conspiracy to lie to all us
unwashed afflicted masses -- and nothing works better when it comes to
fundraising than rolling out some feeble looking folks in wheelchairs, so i am
not quite clear why it is that you think these charitable foundations that are
looking for dough and whose employees depend on the dough to get a paycheck,
would be involved in some medical industrial complex elaborate plot to hoodwink
all msers by downplaying the grim realities of the disease. to what end, rob?
what would be the purpose of this elaborate and insidious lie?
if it is the lie you purport it to be, if you are the only one with the truth,
please share it. or call oliver stone and have him work up the screenplay. or
call mulder and scully and let's turn it into an x-file.
ed is correct when he says your credibility is in question. i dont know who you
are. none of us do. maybe you are nothing more than a troll who gets off by
scaring newbies by spouting grim statistics, by telling them they are going to
die at 55 (or however old they would be 22 years down the road), by telling
them not to listen to their neuro who will lie to them and never admit that a
nursing home is in their future. you scared me when i was first dxed. but you
know what rob, i am a reporter, a researcher by trade. (just for the record, i
have been a journalist for 15 years, have a masters degree in journalism from
the university of missouri journalism school, one of the best in the country,
and for the past five years have worked for the miami herald, a very
well-respected newspaper.) i have communicated by phone, letter and email with
200 msers in the past year. i have read dozens of articles and studies. i have
not found one study that supports anything you claim is fact. and the anecdotal
info i have from those i spoke with also trends against what you spout.
is this a shitty disease? you bet. do i wish i didnt have it? you bet. is it
possible that some day i will wind up in a wheel chair, in a nursing home, a
drooling invalid in need of 24/7 care, on a ventilator, with a feeding tube,
paralyzed? you bet. is there a 75 percent chance the worst WONT happen to me?
you bet, whether you, for whatever your reason, want to admit it or not.
i know you are likely a busy guy rob. but if you have time to type long emails
that scare the crap out of the newly dxed, the least you can do is give us your
cites. if you cant, then stop scaring people. being newly dxed is hard enough
without your unsubstantiated gloom and doom gnawing at the brain at 4am.. what
you do is wrong. prove what you are saying. and if you dont then expect for the
good people on this group to refute your posts so that no one is unnecessarily
wigged out.
rob wrote:
<<Credibility? Has that ever been an issue with me? Dont think so. And just
FYI, not all studies are on medline. Not that these wouldnt be. I just
wouldnt want to have anybody think that medline is the final ultimate
authority. Its the best we have. But not perfect.
What irks me about medline is that when I happen to run across something
that is VERY interesting it doesnt even have the abstract. Argh... ;^)
You say you have run across information contradictory to mine?! Thats
wonderfull news. I wasnt aware of any studies other than the ones I have.
Please share.
Rob>>
ed hill
hi rob
nice of you to take the time to address my concerns. thanks!
"rob" <22rdu...@idt.net> writes:
>Credibility? Has that ever been an issue with me? Dont think so. And just
>FYI, not all studies are on medline. Not that these wouldnt be. I just
i'd have to agree that credibility seems a non-issue with you.
but it really is an issue with me and i'll go so far as to say others on
the group as well.
it's certainly important for newbies logging in terrified by a new DX and
there ignorance of the real liklyhood of living a meaningful life with
this bug.
it's true that many studies aren't in medline. most are never published at
all. many are are presented at conferences or passed around informaly. but
since i get most of my full text stuff and harvards countway medical
library, i'm pretty sure that i have access to anything that's made it
into print. so don't hold back.
if it's not in print, i'll just call the authors. no problem.
name those sources rob. don't hold back on my account!
>You say you have run across information contradictory to mine?! Thats
>wonderfull news. I wasnt aware of any studies other than the ones I have.
>Please share.
>Rob
already posted the stuff rob.
actually i didn't so much "run across" as wade through. there's a lot of
researchers out there who's work sorta' makes your statements look, well
rob. you just don't look very credible.
i found it all while looking for something, anything really. to support
your statements. didn't find anything rob.
mountains of stuff that refuted your "facts". but nothing in support of
you.
i was trying to help. really. given the "good info" and "support" you've
provided to so many on the group it's the least i can do. i'll continue to
try and help you out in this way whenever i see your posts.
what helped me most about this group was how the very few who are hit the
hardest respond.
there are hard realities with MS and we commit suicide far more often than
the general public. severe depression and chronic pain are just part of
the terrain for some of us. there are folks on this group who's courage is
breathtaking.
for all of the difficulties these folks live with they don't take cheap
shots of inflate their ego's by hurting others. they reach out in support
of others. that's character, real courage.
they could easily use a false name and from the relative safety of their
keyboard, lie and hurt others just to amuse themselves. who could blame
someone with trigeminal neuralgia or a quadraplegic for a moments
embittered weakness. for falling prey to the urge to hurt folks just
because they can safely do so.
i've heard that sometimes healthy folks do it. seems sorta small and
cowardly in that light doesn't it?
good thing "credibility isn't an issue" with you.
warmest regards
ed
rob
viewed it.
How old are you?
>
>they could easily use a false name and from the relative safety of their
>keyboard, lie and hurt others just to amuse themselves. who could blame
>someone with trigeminal neuralgia or a quadraplegic for a moments
>embittered weakness. for falling prey to the urge to hurt folks just
>because they can safely do so.
>
>i've heard that sometimes healthy folks do it. seems sorta small and
>cowardly in that light doesn't it?
>
>good thing "credibility isn't an issue" with you.
>
>warmest regards
>ed
Ed your not so subtle inuendos make you look petty. There is no conspiracy
to make up things to upset people. There is only heart felt concern that
someone may be diuaded from intelligent and wise treatment by some scam
artist or honestly misguided individual. I would rather have people know
the truth, learn to deal with it, and treat their illness with the reverence
it deserves and be disliked, rather than be loved all the way to the grave
for saying nothing.
So being to tired to crawl into my library of an attic and find what you
are infering that I made up, I instead did just a cursory medline check.
Which aperantly you have not done.
Here you go. I would love to see anything to the contrary. If it exists.
Of which you have shown nothing. This study refutes your claim that suicide
is extraordinarily high. It is high, any death is too much, but not anymore
than for other fatal illness's.
Title
Underlying cause of death in Danish patients with multiple sclerosis:
results from the Danish Multiple Sclerosis Registry.
Author
Koch-Henriksen N; Brønnum-Hansen H; Stenager E
Address
The Danish Multiple Sclerosis Registry, Rigshospitalet, Copenhagen N.
ni...@post3.tele.dk
Source
J Neurol Neurosurg Psychiatry, 65(1):56-9 1998 Jul
Abstract
OBJECTIVES: To determine the underlying causes of death in a large
population based register series of patients with multiple sclerosis.
METHODS: The Danish Multiple Sclerosis Registry, which contains virtually
all diagnosed cases of multiple sclerosis in Denmark who were alive in 1949
plus cases with onset of multiple sclerosis in the period 1949-93, who have
been diagnosed and notified by 1 January 1994, was linked with the Danish
Registry of Causes of Death, in which ICD codes for causes of death from the
death certificate are stored for all Danish citizens. RESULTS: 6068 register
cases of multiple sclerosis, who had died in the period 1951-93, were
included. Multiple sclerosis was noted on the death certificate as the
underlying cause of death in 55.4%; cardiac or vascular diseases in 17.6%;
cancers in 8.6%; respiratory or infectious diseases in 5.1%; other natural
causes in 9.5%; accident or suicide in 3.8%. The distribution varied with
age at death. Standardised mortality ratios (SMRs) were computed on the
basis of the 8142 incident cases, who had onset of multiple sclerosis within
the period 1951-93; the SMRs for causes of death other than multiple
sclerosis were highest for infectious or pulmonary diseases: 2.46 (95%
confidence interval (95% CI) 2.04-2.94); suicide: 1.62 (95% CI 1.29-2.01);
cardiac or vascular diseases: 1.34 (95% CI 1.22-1.48); accidents 1.34 (95%
CI 1.02-1.71); and significantly lower than unity for cancers: 0.79 (95% CI
0.70-0.90), lower for men than for women. CONCLUSIONS: More than half of the
patients with multiple sclerosis die from multiple sclerosis or
complications of the disease. Among other causes, patients with multiple
sclerosis have an increased risk of dying from heart or vascular diseases
but a reduced risk of dying from cancer. An increased risk of death from
suicide and accidents can be indirectly attributed to multiple sclerosis.
The diminished risk of dying from cancer may be a result of incomplete
ascertainment of cancers in disabled patients with multiple sclerosis.
--------------------------------------------------------------------------
Thie below study shows us that only 14% are disability free or have a "mild"
disability after 25 yrs.
Title
The natural history of multiple sclerosis: a regional study with some
longitudinal data.
Author
Miller DH; Hornabrook RW; Purdie G
Address
Department of Medicine, Wellington School of Medicine, University of Otago,
Wellington Hospital, New Zealand.
Source
J Neurol Neurosurg Psychiatry, 55(5):341-6 1992 May
Abstract
A regional survey of multiple sclerosis (MS) patients in Wellington, New
Zealand in 1983 identified 245 patients, giving a prevalence (all categories
included) of 72 per 100,000. Retrospective review of the history and medical
records identified a poorer prognosis for disability where there was
progressive onset of symptoms, secondary progression after a remitting
phase, older age of onset (40 years or more), or a motor syndrome involving
the limbs at presentation. In 1983 follow up data were obtained on 96
patients who were seen during a previous survey in 1968. For those with
definite or probable MS, progression to severe disability (Kurtzke
disability status scale (DSS) 6-9) or death (DSS 10) was seen in 26/34 with
moderate disability (DSS 3-5) in 1968 and in only 5/29 with mild disability
(DSS 0-2). When the analysis is confined to those with symptoms for at least
five years in 1968, severe disability or death from MS occurred in 22/30
with moderate and 4/19 with mild disability (chi 2 = 10.8, p = 0.001). It is
concluded that the patient's established disability level after five years
of illness is a useful, but not infallible, prognostic indicator. From the
follow up of the 1968 patients, the probability of MS-related mortality for
a given disease duration was calculated. Using this survival distribution to
adjust the disability ratings in the 1983 population, it was found that the
proportion with mild disability decreased steadily with increasing disease
duration, reaching 14% when the disease duration was more than 25 years.
Language
Eng
Unique Identifier
92291728
----------------------------------------------------------------------------
----------------------------
The below study shows us that the avg age of death for these particular
locals has risen from 52 to 59. Thats rather good. Since the avg age of
onset is from 29 to 32 and the past avg age of death was 52 we can see that
they only survived 20 yrs. Thats not so good. But as I mentioned the
ability to treat the symptoms has improved and in the period of the study
survivability had raised to 59.
Title
Mortality rates from multiple sclerosis: geographical and temporal
variations revisited.
Author
Williams ES; Jones DR; McKeran RO
Address
Department of Public Health Medicine, Croydon General Hospital, UK.
Source
J Neurol Neurosurg Psychiatry, 54(2):104-9 1991 Feb
Abstract
A review of the United Kingdom (UK) multiple sclerosis (MS) literature
suggests that over the last three decades prevalence and estimated incidence
rates have increased, while mortality rates have been declining. UK
mortality data over a 30 year period have been studied to examine temporal
and geographical variations, to estimate changes in survival, and to examine
the relationship between mortality and morbidity trends. The study has shown
an overall decline in mortality throughout the UK of approximately 25% over
the 30 year period ending in 1983, and a reduction in the mortality
differential between Scotland, and England and Wales, but no positive
correlation has been found between mortality and morbidity. The overall
decline in death rate in females was 23% and in males 30% over the 30 years
of the survey. The total number of deaths declined by 39% between the five
year periods 1954-58 and 1979-83 in Scotland compared with a 10% decline for
England and Wales. Estimated median age of death increased from 52 to 59
years and the improvement in survival over the period of study was similar
for both countries and is unlikely to have contributed to the reduction in
mortality differential. Within England and Wales regional mortality rates
did not show a clear north-south gradient. The decline in the mortality
differential between Scotland and England (if not artefactual) may provide
an important aetiological clue in the search for the cause of multiple
sclerosis, and the rate of decline suggests an environmental rather than a
genetic aetiology.
Language
Eng
Unique Identifier
91210800
----------------------------------------------------------------------------
---------------------------
From this study we see that the survival times were a little better than
those in other studys. 24.5 yrs. So if you were diagnosed at 31 (like
myself) You have the joy of hoping that you may make it to 55.5yrs.
Title
Survival pattern and cause of death in patients with multiple sclerosis:
results from an epidemiological survey in north east Scotland.
Author
Phadke JG
Source
J Neurol Neurosurg Psychiatry, 50(5):523-31 1987 May
Abstract
The mean survival period in a series of 216 multiple sclerosis deaths, which
formed part of a large prevalence sample observed in the Grampian region of
Scotland, was 24.5 years, with an insignificant difference between females
(25.7 years) and males (23.5 years). A third of the patients survived for
over 30 years after onset. The age at death ranged between 25-80 years, with
majority of the deaths occurring in the seventh decade (37%). On comparing
life expectancy with the Scottish general population using life tables, only
a slight reduction in the short-term (less than 10 years from onset)
survival was noted in all age groups, with the exception of those with onset
over the age of 50 years. The long-term life expectancy was however markedly
reduced in all age groups compared with the controls. The survival period
could be accurately predicted from the degree of disability at a point in
time, and could be correlated with a number of clinical features, the most
important of which was the age at onset. Eighty five per cent of those with
onset of multiple sclerosis over the age of 50 years died within 20 years.
Patients with a cerebellar disturbance at onset survived the shortest, and
those with a brainstem lesion or retrobulbar neuritis the longest; those
with a pyramidal dysfunction had an intermediate prognosis. Other parameters
which could be correlated with the survival were: the timing and frequency
of occurrence of psychiatric and urinary symptoms, interval between onset
and first relapse and the course of the disease.(ABSTRACT TRUNCATED AT 250
WORDS)
Language
Eng
Unique Identifier
87225001
----------------------------------------------------------------------------
---------------------
Make what you want out of this study. It pissed me off because it hammers
home the likelyhood of what is in my future. I dont pay to much attention
to the stats but this one predicts even worse for me than I had. ugh. And
again it predicts death in 24.5 yrs.
Title
Clinical aspects of multiple sclerosis in north-east Scotland with
particular reference to its course and prognosis.
Author
Phadke JG
Address
Department of Neurology, Aberdeen Royal Infirmary, UK.
Source
Brain, 113 ( Pt 6)():1597-628 1990 Dec
Abstract
The prognosis and course of multiple sclerosis (MS) and the factors that
affect them were assessed in a group of 1055 patients, representing an
unselected (epidemiological) sample observed in the north-east (Grampian
region) of Scotland for a period ranging between 1 and 60 yrs. In 7% the
disease began before the age of 20 yrs, in 12% after the age of 50 yrs, and
in the remainder onset was between the ages of 20 and 50 yrs. The
male/female ratio was 1:1.8. Mean disease duration in those observed until
death (216 patients) was 24.5 yrs, with no significant difference between
the sexes. Prognosis was assessed either by the interval between onset and
death or by the degree of disability over a defined period of time.
Depending on the length of follow-up, just over one-quarter (26%) to over
one-third (36.3%) had a benign course and between 8.0 and 17.7% had a poor
prognosis. Nearly a third had a remittent (32.8%) or relapsing cumulative
(34%) course and 9% had a progressive course from the start. Several factors
were noted to affect the prognosis. Prognosis was significantly better,
independent of sex, in those with (1) an early onset (less than 40 yrs of
age); (2) retrobulbar neuritis or a brainstem lesion or sensory symptoms
alone at onset; (3) short duration of initial symptoms (less than 6 months);
(4) a long onset--first relapse interval (greater than 1 yr); (5) a
remittent course in the beginning and (6) lack of a family history of MS.
The factors which predicted a poor prognosis included: (1) a late onset
(greater than 40 yrs of age); (2) progressive course from the start; (3)
multiple sites of lesions initially, or a cerebellar or spinal cord lesion
at the onset; (4) psychiatric or persistent urinary symptoms at the onset or
within 10 yrs; (5) persistent initial symptoms (beyond 1 yr); (6) early
first relapse (within 6 months); (7) a family history of MS; (8) social
class status IV and V; and (9) bilaterally prolonged visual evoked potential
(VEP) P100 latency. Address in childhood and at the onset of the disease,
changes in the CSF and CT brain scan were not of predictive value.
Language
Eng
Unique Identifier
91113854
----------------------------------------------------------------------------
---------------------
In this study 13 of 52 were DEAD in only 12 yrs. 20 that did servive were
SEVERLY disabled. In half of the patients, obviously the ones that
survived, it had prgressed to the progressive type disease in only 7.3 yrs.
Title
Multiple sclerosis: disability and mortality in a cohort of clinically
diagnosed patients.
Author
Citterio A; Azan G; Bergamaschi R; Erbetta A; Cosi V
Address
Neurological Institute C. Mondino, University of Pavia, Italy.
Source
Neuroepidemiology, 8(5):249-53 1989
Abstract
A sample of hospitalized MS patients was selected according to clinical and
demographic criteria with the aim of establishing prognostic factors. The
sample included 52 patients with first hospitalization from 1 January, 1975,
to 31 December, 1976. At follow-up after 12 years a malignant course was
observed in 33 patients (death in 13, severe disability in 20 patients). The
malignant course was related to age at onset (greater than or equal to 35
years) and higher disability, progressive course and cerebellar symptoms at
onset. One half of patients with a relapsing-remitting course entered into a
progressive phase of the disease after a mean duration of 7.3 years.
Language
Eng
Unique Identifier
90044436
---------------------------------------------------------------------------
Ed you may apologise anytime you like. But I dont expect one in the near
future since the stats predict otherwise. Only 12 out of 67 times did Ed
apologise when mistaken in assumption and accusatory in tone. Differential
possibility is that Ed may grumble a bit and try to save face. (9 of 67)
Duncan et all... 98. ;^)
And Lisalisa, I know that I upset people and that you have the right to be
angry, IF I had made this crapploa stats up. But I didnt. Sorry.
It is interesting to see people hurl insults and unethical allegations
around when their view of the future is set back. Emotions can play havoc
with a persons perceptions. I didnt create this disease folks, I didnt
make any shit up. To be fair though, the studys I found on Medline were a
little better than the ones I have. I only posted the studys I found on
medline that I felt were giving better outlooks than the results that I
recall.
There is no point in carrying this on any further unless you have a specific
question about a study. I'll be glad to give a simple interpretation that
could be understood by all.
Rob
rob
LisalisaA wrote in message <19981202042409...@ng113.aol.com>...
>i'm beginning to think, rob, that this is some kind of odd game with you.
ed is
>right about jama and other journals publishing stuff in the past two years
that
>directly debunk what you are spouting.
You do?! Spouting? Lisaaaaa.?
> i have right here in front of me a stack
>of articles sent to me by a friend who reports for american family physcian
>magazine, who when i was dxed did a library search for me of all the major
>journals. article after article, study after study, from the mayo clinic,
from
>jama, from the new england journal of medicine from the american
neurological
>journal, from the nmss from the ms foundation ALL say the same
thing....things
>are looking up for msers...life expectancy has never been greater....the
odds
>that you will stay ambulatory have never been greater....etc, etc, etc.
Please share with us Lisalisa. I love good news.
>
>i dont know. perhaps i am just one of the sheep, or a jerk, as you once
called
>me,
Eh? did not.
but i cannot >believe that ALL these medical journals and two leading ms
>charitable groups would be involved in some great conspiracy to lie to all
us
>unwashed afflicted masses -
Hey thats a myth that MSers dont bath. I think it is. Uh, I hope...
- and nothing works better when it comes to
>fundraising than rolling out some feeble looking folks in wheelchairs, so i
am
>not quite clear why it is that you think these charitable foundations that
are
>looking for dough and whose employees depend on the dough to get a
paycheck,
>would be involved in some medical industrial complex elaborate plot to
hoodwink
>all msers by downplaying the grim realities of the disease.
I have yet to understand the unethical behavior on the part of the MS orgs.
Your guess is as good as mine. I have no idea.
>to what end, rob?
>what would be the purpose of this elaborate and insidious lie?
>
Perhaps to keep the unwashed and aflicted masses from feeling down and
depressed at their poor prognosis? I dont know. I dont like being
protected and coddled when the future is bleak. Some may I guess. dunno.
>if it is the lie you purport it to be, if you are the only one with the
truth,
>please share it. or call oliver stone and have him work up the screenplay.
or
>call mulder and scully and let's turn it into an x-file.
Why so bitter? Did I ruin you view of your future?
>
>ed is correct when he says your credibility is in question. i dont know who
you
>are. none of us do. maybe you are nothing more than a troll who gets off by
>scaring newbies by spouting grim statistics, by telling them they are going
to
>die at 55 (or however old they would be 22 years down the road),
At one particular local they have been remat\rkable in extending the
lifespan of MSers. In the study I posted they have got it all the way up to
59. That is the highest that I could find. Of course you have to reaklize
that part of that raise in lifespan was just diagnosing people earlier than
they had been. So it artificially raised the length of the survivability.
But it also had legitimate reults as well.
by telling
>them not to listen to their neuro who will lie to them and never admit that
a
>nursing home is in their future.
Of course a nuero isnt going to tell you that. It may not be true for any
particular individual. What they hide is the "possibility".
> you scared me when i was first dxed. but you
>know what rob, i am a reporter, a researcher by trade.i spoke with also
trends against what you spout.
>
Firstly you should be scared. (alittle) Spout?! Whats with this "spout"?
Is that Fraudian sli..? ;^)
If you are such a great researcher, which I am sure you are, then why havent
you simply gone to medline and looked up MS and mortality? Or MS and death
rate, Or MS and outlook. It wasnt extraordinarily hard.
>is this a shitty disease? you bet. do i wish i didnt have it? you bet. is
it
>possible that some day i will wind up in a wheel chair, in a nursing home,
a
>drooling invalid in need of 24/7 care, on a ventilator, with a feeding
tube,
>paralyzed? you bet. is there a 75 percent chance the worst WONT happen to
me?
>you bet, whether you, for whatever your reason, want to admit it or not.
>
>i know you are likely a busy guy rob. but if you have time to type long
emails
>that scare the crap out of the newly dxed, the least you can do is give us
your
>cites. if you cant, then stop scaring people. being newly dxed is hard
enough
>without your unsubstantiated gloom and doom gnawing at the brain at 4am..
what
>you do is wrong. prove what you are saying. and if you dont then expect for
the
>good people on this group to refute your posts so that no one is
unnecessarily
>wigged out.
Lisalisa, I dont ordinarily point to my e-mail because one, its
unsubstantiatable, and two they are private. But I will say this. I
recieve dzens and dozens of e-mails from lurkers who know the score. They
are either unwilling to scare the newbies or are unwilling to deal with the
rath of the self protective psychs that would lash out at them for speaking
the truth. I have no such fear. (well other than of my MS that is) I have
no problem holding my own, so I havent any problem with insults from you or
Ed.
(you should see his e-mails, they make this full grown man blush) ;^)
It is unfortionate that it comes from you here on this NG in a public
forum when in private you make your professed love and attraction to me
uh... rather well known and explicite. cough, cough. (just kidden) ;^)
Lisalisa, I have tired to e-mail both of you and its still a suckin. Our
house was built in 1915. its a gourious ittle 2 story cottege style, the
attic is all tounge and groove, cuter than a button. But it doesnt even
have a pull down stair case. Whats up with that? So you see it is rather
involved for me to get up there and wade through litterally tons of books,
papers, and summaries. (I told the wife we whould have kept that stuff in
the basement where I can get to it) But nooooo..... ;^)
When I have the time and energy to get up there I'll do it. I hope that the
medline abstracts I found will suffice for the time being. They only differ
by 1.5 yrs so I hope it isnt a big quibling point.
Rob.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
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.
..
stupid server!
rob
LisalisaA wrote in message <19981202195349...@ng116.aol.com>...
>thank you rob for finally posting your so-called evidence that we will all
be
>dead or vegetables in 22 years.
Lisalisa, that has never been said by me. Not to mention its completely
dishonest to state such a thing. You are suprising me.
>if i were a college professor i would give you
>an f. if i were your editor i would give you a pink slip.
>
And if I were a cross dresser I would wear it. That and 6 inch pumps.
>you are citing out of date research, AND you are extrapolating that these
worst
>case scenarios apply to all, when what i read clearly points to prognosis
being
>the worst for progrssives at onset, late onset, motor symptoms etc. etc.
>
My mistake. You are right. All research is invalid if it doesnt
specifically apply to you and your particular form of the disease. Nobody
else is ill. Just you. There must be only you posting on this NG. And me,
your alter ego wearing an editorial pink slip and high heels.
Just a bit of info for you. Studys of this kind can NEVER be "out of date".
Some can be flawed by incorrect interpritation or unseen errors in data
collection. These were neither. thats why I posted them. Only a "little"
bit has been done to improve our chances. The abc's, chemo, radiation, etc
are helping us at this moment to feel that we are improving our chances.
But that has not been shown. Somehow I get the feeling that you think that
the sciences were invented in the 90's. It wasnt. It was just as valid in
the 20's as today. The scientific method was one of the greatest
advancements in mankinds history. It was a turning in our future. And its
dirt old. Did you not see the results that showed that half of RR go to CP
in 7.3 yrs? Isnt that reason enough to raise the flag of alarm? For you I
guess not.
For me it is. It is to deter the bogus flim/flam therepies from keeping
people from making unalterable life threatening mistakes. You behave as if
most people are on one of the abc's. theyre not. Few are actually.
(comparetively)
>alot of newbies dont fall into any of those categories rob. take me for
>instance. my first episode was at 25. ON. i didnt know then that's what
caused
>my 3 weeks of blurred vision. my neuro found the scarring on my left optic
>nerve when i went in for the ON and other symptoms-- 90 percent sensory--
that
>i developed at 34...so even according to your outdated studies my prognosis
is
>pretty damn good...
Yes. 3 cheers for Lisalisa. Purely having the agravating sensory problems
does have a better outlook than for the rest of us. I am glad for you.
>
>you ought to offer the qualifications when shouting the sky is falling.
>
>i dont owe you an apology. nothing you cite here is anything i havent read.
>it's nothing that the ms society and foundation havent said. it's nothing
my
>doc hasnt told me.
>
Then you are well prepared if the worst might happen upon you.
>you are taking worst case research and applying it to everyone.
>
I never said anysuch thing. That is dishonest.
>im not going to argue with you anymore after this post, rob. you can keep
>yelling we are all doomed and i will keep making sure the newbies know this
is
>outdated data from worst case scenarios.
The studies can never be outdated. You act like the corticoids were
invented in the 60's or something. Theyre not new. Copaxone has been
around since the 70s. And what do you mean "worst case scenarios". Avgs
can hardly be called "worst case scenarios".
> you dont have one bit of info here
>done after the abcs were invented or after mris allowed earlier
intervention.
>
>poor conclusions rob.
>
Look again at the dates.
>sorry that you think you will be dead at 55. must be a shitty way to live,
>wallowing in the worst. maybe you like having such a millstone hung around
your
>neck. send me an email on your 56th birthday rob. we can talk then.
LOL. Lisalisa, I have plenty of faith in the trodding along of science.
Well be fine in 20 yrs. But if the breakthroughs dont come... are you
willling to have played the fool? I am not.
>you'll
>note that in one of these studies you quote, they say death was most
prevalent
>in the 7th decade. must mean they were dxing later. not doing any
intervention
>earlier hmmm. sounds a little like say what used to be the case with
leukemia
>or cancer of the breast or prostate or pick any disease rob and quote the
>mortality rate of patients diagnosed in 1948, 1958, 1968, 78, 88...so
on....bet
>life expectancy gets longer and longer....
(just FYI the life expectancy hasnt changed for anyone of the diseases you
have mentioned, but if you have 5yr results that disagree with that, I am
awaiting it with baited breath... Find some that are atributable to
treatments, as apposed to earlier and earlier diagnosis)
>common sense my friend...too bad you
>dont have any...or that you seem to want to hurt people....you are either
>experiencing serious cognitive and emotional problems or you are a
>troll...either way, you have my sympathy...
>
Lisalisa, your unwillingness to accept the possibilities of the future is
your business. Insult all you want. Call me any childish names you like.
Flame me as hard as you like. Whatever puts your mind at peace with the
ignoring of the future possibilities.
>just for the record,
>
>you have one cite in here from 1998.
>>
>and as you can see the cutoff for subjects was death in 1993. pretty out of
>date rob, since mri didnt become popular till THIS decade and since the
>interferons didnt arrive full scale until after the last test subject in
this
>study was dead.
MRI's have done nothing to help patients survival. I am not even sure what
you are trying to imply? They heklp contribute to an earlier diagnosis.
But diagnosis has never been real difficult. MS is a diagnosis of exlusion.
It has always been that.
>
>the next study you cite is also outdated, publishe in 1992 and done in 1983
>longitudinaly on patients dxed in 1968. as you will see, it says there was
a
>poor prognosis for disability for those who were progressive at onset,
>secondary progressinon, onset after 40 or motor symptom at
presentation...quite
>a qualification there rob:
>
I forgot, your the only one on the NG and your the only ill person here. I
forgot.
>the next study is also OUTDATED, rob
>and the next and the next....you get the point by now...so does everyone
else i
>hope....
>
>
Yes that youre grasping for straws trying to validate your view of the
future. And in doing so you are by default trying to invalidate precious
information that shows the seriousness of the disease. But hey, you got the
good MS. Thats what counts right?
Your turn Lisalisa, You and Ed say you have evidence that says this disease
isnt nearly as serious as I say it is, You say you have evidence that is
contrary to Medlines. I would love to see it.
The onus is upon you. But it wont be forecoming because it doesnt exist.
If you think, as you seem to, that the ABCs are some great and fantastic
treatment for this disease and that they are going to change the clinical
outlook for us MSers, then I ask you... Why arent you up on your heels
attacking these flim/flam therepies? Why attack me? Oh its because I make
you FEEL bad. The hell with everyone else right Lisalisa? YOU and YOUR
sleep is whats important.
The heck with the poor lady who is doing 2 gallon Starbucks enemas just
before her 10 beestings prior to eating the swank/paleolithic/lizard gizard
diet stuffed with 10 valium tablets.
One would think your time and ire would be better spent defending the very
scientific advancements that you are counting on to change the stats that do
exist, and that are flawless.
I do care more than just about myself. It seams though, that that is the
only thing you are concerned with.
Rob
LisalisaA
an f. if i were your editor i would give you a pink slip.
you are citing out of date research, AND you are extrapolating that these worst
case scenarios apply to all, when what i read clearly points to prognosis being
the worst for progrssives at onset, late onset, motor symptoms etc. etc.
alot of newbies dont fall into any of those categories rob. take me for
instance. my first episode was at 25. ON. i didnt know then that's what caused
my 3 weeks of blurred vision. my neuro found the scarring on my left optic
nerve when i went in for the ON and other symptoms-- 90 percent sensory-- that
i developed at 34...so even according to your outdated studies my prognosis is
pretty damn good...
you ought to offer the qualifications when shouting the sky is falling.
i dont owe you an apology. nothing you cite here is anything i havent read.
it's nothing that the ms society and foundation havent said. it's nothing my
doc hasnt told me.
you are taking worst case research and applying it to everyone.
im not going to argue with you anymore after this post, rob. you can keep
yelling we are all doomed and i will keep making sure the newbies know this is
outdated data from worst case scenarios. you dont have one bit of info here
done after the abcs were invented or after mris allowed earlier intervention.
poor conclusions rob.
sorry that you think you will be dead at 55. must be a shitty way to live,
wallowing in the worst. maybe you like having such a millstone hung around your
neck. send me an email on your 56th birthday rob. we can talk then. you'll
note that in one of these studies you quote, they say death was most prevalent
in the 7th decade. must mean they were dxing later. not doing any intervention
earlier hmmm. sounds a little like say what used to be the case with leukemia
or cancer of the breast or prostate or pick any disease rob and quote the
mortality rate of patients diagnosed in 1948, 1958, 1968, 78, 88...so on....bet
life expectancy gets longer and longer....common sense my friend...too bad you
dont have any...or that you seem to want to hurt people....you are either
experiencing serious cognitive and emotional problems or you are a
troll...either way, you have my sympathy...
just for the record,
you have one cite in here from 1998.
<<J Neurol Neurosurg Psychiatry, 65(1):56-9 1998 Jul
Abstract
OBJECTIVES: To determine the underlying causes of death in a large
population based register series of patients with multiple sclerosis.
METHODS: The Danish Multiple Sclerosis Registry, which contains virtually
all diagnosed cases of multiple sclerosis in Denmark who were alive in 1949
plus cases with onset of multiple sclerosis in the period 1949-93, who have
been diagnosed and notified by 1 January 1994, was linked with the Danish
Registry of Causes of Death, in which ICD codes for causes of death from the
death certificate are stored for all Danish citizens. RESULTS: 6068 register
cases of multiple sclerosis, who had died in the period 1951-93, were
included.>>
and as you can see the cutoff for subjects was death in 1993. pretty out of
date rob, since mri didnt become popular till THIS decade and since the
interferons didnt arrive full scale until after the last test subject in this
study was dead.
the next study you cite is also outdated, publishe in 1992 and done in 1983
longitudinaly on patients dxed in 1968. as you will see, it says there was a
poor prognosis for disability for those who were progressive at onset,
secondary progressinon, onset after 40 or motor symptom at presentation...quite
a qualification there rob:
<<Wellington Hospital, New Zealand.
the next study is also OUTDATED, rob
and the next and the next....you get the point by now...so does everyone else i
hope....
<<ed.
Author
Williams ES; Jones DR; McKeran RO
Address
Department of Public Health Medicine, Croydon General Hospital, UK.
Source
J Neurol Neurosurg Psychiatry, 54(2):104-9 1991 Feb
Abstract>>
Subject: Dont read...Re: confused
From: "rob" <22rdu...@idt.net>
Date: Wed, Dec 2, 1998 5:13 PM
Message-id: <744aqt$g...@nnrp3.farm.idt.net>
----------------------------------------------------------------------------
---------------------------
----------------------------------------------------------------------------
---------------------
Rob
edward hill
i'm shocked, simply shocked that you would accuse me of flaming you.
there i was trying to find any evidence anywhere that you spoke the truth.
i can only apologize for my failure to do so. and could i help it that in the
case of your saying that MS'rs end up in a wheelchair an average of
fifteen years after DX. there were not only no studies to this effect.
but quite the opposite! there were simply no studies using time from DX
as a marker for measuring time to loss of ambulation.
(see my earlier post re 15 year wheelchair claim)
some gratitude rob. there i was trying to help you.
i did a post on "growth factors and cancer" too.
rob wrote:
> Sarcasm seems to suit you rather well Ed. I wish the unverse were as you
> viewed it.
if i seemed to be sarcastic i can only say that it's the same trouble you've had
(i know this 'cause you told us) my awkwardness with this gosh darn
complicated email stuff.
it sometimes causes me to misconscrew my verbiage. you have thus far
been an unimpedable and utterly unvaluable source on info and support.
> Ed your not so subtle inuendos make you look petty.
i'm flattered!
but i'm not petty at all, i have a rather exansive nose that precludes such
superfacial qualities.
> There is no conspiracy
> to make up things to upset people. There is only heart felt concern that
> someone may be diuaded from intelligent and wise treatment by some scam
> artist or honestly misguided individual. I would rather have people know
> the truth, learn to deal with it, and treat their illness with the reverence
> it deserves and be disliked, rather than be loved all the way to the grave
> for saying nothing.
i'm with you all the way here. i never bought the grassy knoll story either!
better that you should post undocumented assertions scaring the hell out of
the newly DX'd that let them actually fumble around with the silly and well
established idea that they can transend the diseases insults .
and by doing this live a long and full life.
tough love rob. that's the thing!
>
> So being to tired to crawl into my library of an attic and find what you
> are infering that I made up, I instead did just a cursory medline check.
> Which aperantly you have not done.
in this case i haven't.
by the way. i saw your post to lisa. rather inflammitory wasn't it?
was your house really made with tongue and cheek methods?!
tongue and groove has always been one of my favorite means of joinery.
ask anyone i've dated. really caps off a great night out.
you have my full attention. i'll do my best to provide documentation
regarding anything you post. i know that you are a very intelligent
(i know this 'cause you said so) and busy man and you wouldn't want
that to cause you to mislead anyone.
i'll even go through these abstracts you posted here. old as some of
them are, i'm sure there is something valid in there somewhere.
i know you wouldn't post bad info just to make a point.
let's look!
>
>
> Here you go. I would love to see anything to the contrary. If it exists.
> Of which you have shown nothing. This study refutes your claim that suicide
> is extraordinarily high. It is high, any death is too much, but not anymore
> than for other fatal illness's.
kinda' looks like your stuff does the job of refuting your statements for me.
one reason i didn't post anything on mortality is the lack of any figures that
reflect
the current and ongoing rapidly improving treatment protocals.
gee rob. this study seems to say (near the bottom there) that the incidence of
suicide is higher than among the general population.
doesn't say anything about any othe fatal diseases. and FYI MS is far from
always fatal.
let's move on. i'm sure you've got a point here. given your heartfelt desire to
help and all.
i'm confused. it looks to me like this is a review of a study done in 1983!
15 years ago! with reference to info gathered on folks who were symtomatic
in 1968. 30 years ago.
rob, as much as i am trying to find a reason to believe you here. '68 was
thirty years back.
DX was a hit or miss process at best. folks were pretty trashed before they
got a diagnosis.
a standard treatment for mild MS at that time was called
"thoughtful observation" as in do nuthin and hope for the best.
so i guess these figures represent a population with MS that lives essentially
without medical intervention?!
thanks for posting this! it's actually GREAT news. given the contrast it
provides in care available then and now, i'd say it shows us just how bright
our future promises to be!
i just knew you were really an optomist ;^)
the study actually stopped collecting data in '83
another body of data gathered 15 to 45 years ago? i just dunno what to say.
i guess this is another study showing the course of untreated MS.
does this have something to do with our current situation?
i just don't understand. but i'm sure you have good reason for posting this
archeological find.
rob, (all kidding aside)in this case you may be misreading the data. the "mean"
figure
isn't a very good predictor of individual survival. where are your lesions?
that seems to have more bearing than any other datum.
"the majority of deaths occuring in the seventh decade" so time of death was
weighted heavily toweard making at least your seventieth birthday. given the
spread of 25 to 80 years of age i'd say very heavily weighted. 37% made it into
their seventies.
not to bad given that the study ended in 1987.
immunology and neurology were very different things before 87.
quite honestly. at best i suggest you review the changes in these fields in the
last decade before you go posting horror stories.
there is no reason given in this abstract to expect you'll probably die in 24
years.
this is actually the same study you posted above. (see the study immediatly
preceding this one) it's just published in a different journal.
this is a much better abstract though.
i guess that's why you posted it, given your great experience with studies.
my opinion of the studies relevance to our present lives is unchanged though.
the data these studies rest on resembles archeological artifact more than
currently meaningful research.
it's neat to see this much old stuff finding it's way back into discussion.
the researchers would be proud, and i'll venture a bit horrified.
this is a study of HOSPITALIZED MS patients. this is the very darkest
view of MS as a disease.
while i am genuinly saddened at the painful lives the disease has
visited on these people. it's far from average. these are not case studies
that have much bearing on the majority of MS patients.
this study was done in 1975. again, not much help from science back there.
these people were essentially untreated by current standards rob.
see how easy that was :-) tedious due to the meaningless abstracts but
not very painful.
you must know something i don't in order to view this stuff as meaningful.
i wish you'd let me in on it so i can better help!
from what i'm reading you certainly need help in interpreting study data.
and you can be sure my freind. as long as you "help" folks as you have been
there'll always be somebody here to help! hate to see you go to all that
effort alone. it's just too important a job to let you do alone.
don't you worry. i'll just read your stuff and do the menial fact checking.
you're clearly too important for such detail oriented stuff!
besides, it's just plain fun!
best wishes to all
ed
Llor...@webtv.net
to us, and some are more positive. I`m a living example. I`ve had ms for
39+ years. Dxed for 20. I`m 54 and use walls and furniture to get
around. Wheelchair or walker when I go out. Sometimes, just an arm. I
take no medications and never have. I`m broke, but I`m never depressed.
Of course I`ve lost a lot, but this is the hand I was dealt. I could be
negative and miserable, but I choose to make the best of what I have.
And will live at least 3 or 4 decades, maybe more. BECAUSE I SAY
SO!!!!!! Lighten up Rob. Your outlook might become better. Unless men
have a totally different way of looking at life. I`m clueless there.
Might be a control thing. We, women do quiet control. Men seem to make a
big deal of it.
mike the webman
>
> rob
>
> i'm shocked, simply shocked that you would accuse me of flaming you.
>
> there i was trying to find any evidence anywhere that you spoke the truth.
>
> i can only apologize for my failure to do so. and could i help it that in the
> case of your saying that MS'rs end up in a wheelchair an average of
> fifteen years after DX. there were not only no studies to this effect.
> but quite the opposite! there were simply no studies using time from DX
> as a marker for measuring time to loss of ambulation.
>
> (see my earlier post re 15 year wheelchair claim)
>
> some gratitude rob. there i was trying to help you.
ED,
i just had to respond and tell you this was great! i have not had time
to post for a few days due to a fundraising i am doing for a MSer that
needs a computer.i am raising money to get one for him that can be set
up with voice activation.
i have been known to flame,slam,and pulverize a few trolls in my
time,but this letter of yours has to be in the top 10.
i see no reason to jump into the frey or is that turkey shoot? i am
watching you and Lisa take turns ripping into his jugular.i have stepped
back a few paces,so as not to get splattered by any blood rob emits
during his death throngs.
mike the webman
mike sobin
--
dealing with MS can sometimes feel like eating JELL-O with chopsticks!
anti-spam in effect
to reply: webm...@bellsouth.net
rob
>there were simply no studies using time from DX
>as a marker for measuring time to loss of ambulation.
Uh eddy the reason there were no studies, is because I posted none. Rather
obvious. I also mentioned it was only a cursory check on medline. Did you
forget?
>
>(see my earlier post re 15 year wheelchair claim)
>
I havent read any but these two threads. I'll check.
>some gratitude rob. there i was trying to help you.
>
>i did a post on "growth factors and cancer" too.
I read that and I was at a loss for words. Nothing you posted had any
relevance to what we were discussing. IGF-1 is a permisive hormone. It
does not and can not cause cancer. period. If you have cancer then it may
accelerate its growth. I havenever posted anything to the contrary. Its
not the "match" that starts the fire. It is the "gasoline" that can
accelerate the fire. I am not even sure that we disagreed on anything so I
am not really sure what you were arguing. Whatever the case, it is safer
than any of the chemo drugs or irradiation.
(or it appears to be so)
(just FYI, I have a second shipment being sent to me that I feel more
comfortable using.) The first looked so poor that I was reluctant to even
handle it.
>
>tough love rob. that's the thing!
>
What is the truth, you demean by calling it "tough love".
>
>by the way. i saw your post to lisa. rather >inflammitory wasn't it?
And hers was rather insulting. Only because she didnt understand the
studies value and its results. (much like you)
>kinda' looks like your stuff does the job of refuting your statements for
me.
>
You dont understand the studies do you?
>one reason i didn't post anything on mortality is the lack of any figures
that
>reflect
>the current and ongoing rapidly improving treatment protocals.
>
Ed. I am sorry to let you in on this. There are no "rapidly improving
treatment protocols". Science plods. as it must. Medicine plods, as it
must. The world is rife with quick fixes that have backfired. Science must
take its time for its results to have any worth. The abcs are far from new.
>snip<
>.gee rob. this study seems to say (near the bottom there) that the
incidence of
>suicide is higher than among the general population.
Of course it does, I mentioned that.
>
>doesn't say anything about any othe fatal diseases. and FYI MS is far from
>always fatal.
I have never said it is "always fatal". To imply that is dishonest. I
never said it mentioned other fatal diseases either. From my memory alone I
made the comparison. As fallable as it is, the statement stands. MS
suicides are no greater than anyother fatal illness's.
>let's move on. i'm sure you've got a point here. given your heartfelt
desire to
>help and all.
>> Thie below study shows us that only 14% are disability free or have a
"mild"
>> disability after 25 yrs.
>i'm confused. it looks to me like this is a review of a study done in 1983!
>15 years ago! with reference to info gathered on folks who were symtomatic
>in 1968. 30 years ago.
>
>rob, as much as i am trying to find a reason to believe you here. '68 was
>thirty years back.
>
>DX was a hit or miss process at best. folks were pretty trashed before they
>got a diagnosis.
>
Not at all. The only real change in MS diagnosis is the MRI. Which in its
essential form is nothing more than a black and white picture of the plaques
that any competant neurologist could give you the location of when it
concerned mobility and sensory defects without the MRI. ON, clonus, babinski
etc... Hell they can stick your hand in a pot of water and stare at the
wrinkles on your fingers and tell if you are neurologically damaged. (just
FYI i think it was the creator of the redcross who first noticed that
occured with neuro damaged solders) Of course I could have been fed a line
of bs but I think it was her who first noticed it. The MRI has been a help
in validating MS. But its far from the final word when other evidence is
present.
That very thing occured at Loma Linda U med center when I had my last
exacerbation. By students. They nailed it to the millimeter. No MRI was
needed. But I payed for one anyway since my hydrocephalus complicates
matters significantly.
And at the time brain surgery was something being pushed for extremely hard
by every single brain surgion I have visited. With the exception of one.
Dr. Osean O'neal. (or however you spell it) (he was the guy on 20/20 who
treated and helped the recovery of the woman jockey who was wthrown in a
terrible racing accident here in Portland.) The Neuro who pushed the
hardest for surgery was the guy whos claim to fame was removing the arrow
from the drunkards skull which entered through his eyeball and went all the
way back to his scalp. He walked out on his own two feet btw.
How to distinguish who was right was rather difficult. I succeeded. So
there. Nya!
>a standard treatment for mild MS at that time was called
>"thoughtful observation" as in do nuthin and hope for the best.
>
>so i guess these figures represent a population with MS that lives
essentially
>without medical intervention?!
>
That was rare indeed. Although you are right, it did occur.
>thanks for posting this! it's actually GREAT news. given the contrast it
>provides in care available then and now, i'd say it shows us just how
bright
>our future promises to be!
Truth be known the care hasnt changed much. Antibiotics have changed
because strains have changed. They arent anymore effective now than they
were then. (regarding our biggest concerns) Caths are nothing new. URIs
havent been any anybetter treated now than they were then.
What has changed is OUR vigilance. And OUR knowladge. Thats why OUR
education is so important. Any new treatments that you can think of since
the fifties? serious. I may be wrong.
Vaccinations are something that has helped I am sure.
>snip>
Uh,, from your above joking about, I get the impression that you think the
50s 60s 70s and 80s were the dark ages. They were nothing of the kind.
Treatment isnt very differant now than it was then. Minus the abcs. You
like Lisa give me the impresion that you think science was invented in 93 or
something.
>i just knew you were really an optomist ;^)
>> The below study shows us that the avg age of death for these particular
>> locals has risen from 52 to 59. Thats rather good. Since the avg age of
>> onset is from 29 to 32 and the past avg age of death was 52 we can see
that
>> they only survived 20 yrs. Thats not so good. But as I mentioned the
>> ability to treat the symptoms has improved and in the period of the study
>> survivability had raised to 59.
>the study actually stopped collecting data in '83
>another body of data gathered 15 to 45 years ago? i just dunno what to say.
>i guess this is another study showing the course of untreated MS.
>
As I mentioned above "untreated cases" were rare. But it did occur.
>does this have something to do with our current situation?
>i just don't understand. but i'm sure you have good reason for posting this
>archeological find.
>
I think you lack the apriciation of a scientific study.
>>rob, (all kidding aside)in this case you may be misreading the data. the
"mean"
>figure
>isn't a very good predictor of individual survival. where are your lesions?
I make that clear in every post to an individual I make. (not the lision
locoation though)
>that seems to have more bearing than any other datum.
>
>"the majority of deaths occuring in the seventh decade" so time of death
was
>weighted heavily toweard making at least your seventieth birthday. given
the
>spread of 25 to 80 years of age i'd say very heavily weighted. 37% made it
into
>their seventies.
You arent understanding th estudy. Those were people whos MS presented
itself in there 50s. So any conclusion you have made is invalid.
>not to bad given that the study ended in 1987.
>immunology and neurology were very different things before 87.
>
Again I'll reiterate that you are mistaken. The one thing that we have now
are the antivirals. And they arent used in the majority of cases.
(although both of us would agree they should be) I think we both agree...
>quite honestly. at best i suggest you review the changes in these fields in
the
>last decade before you go posting horror stories.
>
It is you that needs to suggest any changes. I am aware of very few.
Please enlighten me.
>there is no reason given in this abstract to expect you'll probably die in
24
>years.
>
For an individual it predicts nothing. It can only give an idea of the
possibility. I have always made that clear.
>> Make what you want out of this study. It pissed me off because it
hammers
>> home the likelyhood of what is in my future. I dont pay to much
attention
>> to the stats but this one predicts even worse for me than I had. ugh.
And
>> again it predicts death in 24.5 yrs.
>>snip>>
>
>this is actually the same study you posted above. (see the study immediatly
>preceding this one) it's just published in a different journal.
>
>this is a much better abstract though.
>
>i guess that's why you posted it, given your great experience with studies.
>
Rather that it was to show something differant.
>my opinion of the studies relevance to our present lives is unchanged
though.
>
>the data these studies rest on resembles archeological artifact more than
>currently meaningful research.
>
Again I think you feel the 60s or 70s were the dark ages. They werent. Far
from it.
>it's neat to see this much old stuff finding it's way back into discussion.
>the researchers would be proud, and i'll venture a bit horrified.
>
Researchers still use these studies for other things. But its (there use
for other puposes) meaningless within the context of this discusssion.
>
>> In this study 13 of 52 were DEAD in only 12 yrs. 20 that did servive
were
>> SEVERLY disabled. In half of the patients, obviously the ones that
>> survived, it had prgressed to the progressive type disease in only 7.3
yrs.
>>
>
>this is a study of HOSPITALIZED MS patients. this is the very darkest
>view of MS as a disease.
>
I guess you dont know that even WAY back then they understood the neccesity
of observation and corticoid treatments on first exacerbation. It wasnt the
darkages you suggest. So tell me, were you hospitalized on your first
exacerbation. MOst are. And usually MS is suspected right from the start,
whether or not the neuro mentions it is another story, thus the hosp and the
corticoids.
Although as others will mention Its not always the case. Evan in this day
and age.
Same with your comment about the other study. Damn near everyone is
hospitalized. Thats how they find there study subjects. You behave as if
they were only hospitalized because they were in dire straights.
>while i am genuinly saddened at the painful lives the disease has
>visited on these people. it's far from average. these are not case studies
>that have much bearing on the majority of MS patients.
Uh... Ed, there is nothing to suggest that these people were hospitalized
for any reason other than the very ones we are hospitalized for. You make
rash judgements.
>
>this study was done in 1975. again, not much help from science back there.
>these people were essentially untreated by current standards rob.
wrong again. By "treatment" what is it you are meaning?
>see how easy that was :-) tedious due to the meaningless abstracts but
>not very painful.
>
And an utterly useless and meaningless effort on your part. sorry you spent
the time.
>you must know something i don't in order to view this stuff as meaningful.
Its called a science background.
>i wish you'd let me in on it so i can better help!
>
>from what i'm reading you certainly need help in interpreting study data.
>and you can be sure my freind. as long as you "help" folks as you have been
>there'll always be somebody here to help! hate to see you go to all that
>effort alone. it's just too important a job to let you do alone.
Your insults sadden me. I had hoped that you may have had someething
inellignet to contribute.
>don't you worry. i'll just read your stuff and do the menial fact checking.
>you're clearly too important for such detail oriented stuff!
Again the insults. Its ok, it doesnt bother me. It saddens me. You would
think that someone so vehement and vitriolic would at least contribute
something meaningfull.
>besides, it's just plain fun!
Now I understand who the troll is.
Those were just a couple of studies I nabbed off of medline. You should
have been able to understand that the moment it was mentioned.
I'll also explain something else. I have a life. When I am to tired to do
anything... this is what I do. Many times I am to tired to even do this.
Thats why the priority level of crawling into the attic perched atop an 8ft
ladder is at the bottom of my list.
I do apriciate the fact that you are willing to dishonor yourself by making
fun of my obvious dificulties in getting my point across in an
understandable manner. Youre an upstanding decent man right? (this tells
us something about you) Btw, check out my spelling. Its laways good for a
few flames/laughs.
Rob
rob
Llor...@webtv.net wrote in
>Lighten up Rob. Your outlook might become better.
I could take that two ways. My personal outlook is pretty good, even
considering the seriousness of my two only attacks. And for the other
possibiblty, my medical outlook is hopefully going to be even better
considering all of the things I am doing. Some may be useless. But at
least they are medically sound and harmless. (well as harmless as harmless
meds can be)
>Unless men
>have a totally different way of looking at life. I`m >clueless there.
I think we do. Its called bullheaded.
>Might be a control thing. We, women do quiet >control. Men seem to make a
>big deal of it.
The only big deal that I am "trying" to make is the seriousness of our
disease and our reluctance to stamp out the fraudulant theropies that may
contribute to something that may not be recoverable.
Eds and Lisas denial of the facts lessons the concerns that many people
have, and that many are living this very moment. They are just reluctant to
get into the same flame war that I am in. btw, part of my past life was
dealing with flame, in a manner of speaking. So I am no stranger to it.
I wonder iwhy, if lisa was so concerned about the emotionally devestating
effects of this info that she removed the "dont read" and re-titled it
"please read". It just made me curious. I'm not insinuating it was self
serving or anything.... Just made me curious.
I am left with the impression she is more concerned with peoples temporary
emotional state than with their long term health. Thats not me. I figure
adults can pretty much deal with reality once its presented. You cant get
over physical problems nearly as easily.
Did you know that any residue from an exacerbation that is there after 9
months (could be a tad off on that stat) we only have a 15% chance of ever
recovering.
Do you know why I post upsetting info like that? Its because I treat people
like adults. And hopefully will convince them of the utmost importance in
treating their disease with inteligence and the respect it deserves. (its
not a paradox, one is the emotional state of maturity, the other knowladge
of ms... which many dont have because their (prior to MS Dx) was never any
need for it.)
This isnt even to you inparticular anymore. Just a smattering of rambling
for the lurkers.
I am less concerned with ya'lls impression of me and more with your physical
health. So there. nya.
Rob
LisalisaA
<<I wonder iwhy, if lisa was so concerned about the emotionally devestating
effects of this info that she removed the "dont read" and re-titled it
"please read".>>
rob that's simple to answer. i wanted to be sure everyone saw how old, outdated
and worst-case your info was. i do care about everyone rob...and i dont believe
in crying wolf and yelling fire unless necessary...i know some people get
leveled by this disease...your cites prove it is not the majority that do...i
think we all should rally and demand better treatment for them and for
ourselves, since it MIGHT happen to us, tho the worst-case is not
likely....check your hs math rob...the mean is not the same as the average....
bottom line, people deserve to know all the qualifications AND the age of the
info you are quoting...now they do. they can see how you've backtracked from
previous sweeping statements like "we are ALL going to end up like annette and
richard pryor" you absolutely said that. what you posted doesnt even come close
to supporting that even for the worst-case folks in your studies, who went
untreated.
rob, now folks can see how wrong your perceptions are and ridiculous your
sweeping claims are. mri has made a difference. and dx of ms has gotten better.
ask the people on this group who waited ten years for a dx of ms was never hard
to dx. ask some of the 1968 folks who had to endure myleograms and who were
dunked in hot water to see if they weakened as their core temperature rose.
that was science at its finest rob...i wonder if the used leeches too. yep. old
as dirt, beautiful science...
finally, people now can see how you talk out of both sides of your mouth and
change your tune as it suits you. you rant all the time about how everyone
should be on the abcs, yet in your last flamorama at me you flat out say the
abcs and everything else are "little" advances that make us think we are doing
better...so what is it rob, are they little pacifiers or the protocal we should
all be on?
oh, one last thing, i never said i was the only one on the NG. another example
of your poor power of interpretation. i know right now i am lucky in my mild
disease. i know that might change. and i feel for those who are progressive.
for your info to be helpful to everyone, people have to know the dates of the
studies, and the qualifiers.
now they do. that is why i asked them to please read. they all deserved to see
your cites...so that they could either breathe easier or know that they are in
the group that possibly might get hit hard so they can take proper precautions
when possible....im happy...knowledge is power...
you can crawl back under your rock now or into your attic. however you like
it...
take care pal... it's been fun...like i said, email me when you turn 56. til
then, i am disengaging from this ridiculous back and forth.
Kate Murphy
>
>I agree for the most part. But I will defend the nursing profession.
Lavonne,
I will too. In spite of many stories about unanswered call bells,
sadistic and uncaring nurses, etc., I have never had that experience.
When I get upset about my mountain of illnesses, I remember a nurse
with a long braid who fed me during my first hospitalization. She
didn't ask, just cut up my breakfast in small bites and fed me slowly
and attentively. I felt the rhythm of her hands and the gentle
acceptance that told me she had absolutely nothing better to do with
that minute than to be with me and help me eat.
I also had a wonderful nurse who wheeled me into a shower the night
before my first cancer surgery and spent half an hour soaping me and
letting the hot water run over me. She put me back in a white, clean
bed and turned the lights down but not off. I fell asleep, relaxed
and healed.
Then there was the nurse who tore into the room every evening, picked
up all the junk that had been thrown around all day, found an ointment
for my sore behind, and made that bed snap to and stay comfortable.
Next to physical therapists, who have given me hope in what I thought
were hopeless situations, nurses are my favorite people.
Kate
Kate Murphy
wrote:
> Even though I do not have any really
>debilitating symptoms and have watched him slowly deteriorate I still
>get extremely apprehensive. Thanks for handling this important question
>with such insight and compassion.
>Marianne the gardener
Dear Marianne,
I have a sister who has been diagnosed for about 10 years and has few
symptoms. As I wobble around on my crutches or wheel the chair on my
worse days and stutter and stammer when I talk, I worry about what
seeing my course of MS will do to her.
All of us are very different, however, even in families.
Take care,
Kate
Kate Murphy
LaVergne) wrote:
>Your kids also need to learn from you how to experience a loss, to feel
>that pain, and still have hope and determination to go on. That's what
>resiliency comes from. To just "buck up" is very difficult to do, but
>to cry out your grief, yell out your anger, and express your
>disappointment will help you to bolster your resolve to keep on,
Patti and Irene,
These are powerful words ... but good ones.
I am working on a series of essays that I plan to call An Accumulation
of Griefs because that is what this disease is about. It is a dozen
losses, big and little, over time and then a dozen more.
Grief can lead to reconciliation or to bitterness. That part is up to
us.
Today seems pretty good for me. I woke up with a killer headache, but
Sebastian the Toothless Cat and I were able to wobble down the road a
bit to recapture Jay, the disobedient golden retriever. Sebastian is
a strange animal, as all cats are. He is lying over my left arm now
to observe my typing. When I go to get the mail or walk with my
crutches down the road a bit, he follows. We make a strange group.
Jay leading, running in golden retriever circles, me wobbling along on
my crutch, and Sebastian bringing up the rear.
Yesterday I realized that Muddle, the old cat, is fifteen years old.
We got her at Christmas when she couldn't stay over Christmas vacation
in her cage as part of the agriculture class in my son's eighth grade.
She was sick, had ear mites, and was skinny -- I guess she was the
demonstration subject in how not to treat a cat. She's still skinny,
lives in the bedroom, comes out for milk in the morning and some cat
food, and hisses at the other two cats. For her birthday, I'm moving
her up to half and half for breakfast.
Somewhere in my book there will be some room for cats and for the
golden retriever who is now Playmate of the Month on the 1999 GRROWLS
calendar.
I hope you all find some small joy today.
Love,
dKate
Eagle Way2
thirty years back."
Ahhh, but Ed...
You forgot! Rob "says" there's no such thing as "out-of date" info... I find
that a pretty interesting statement in itself. Guess there's no reason for all
those doctors to be doing more and more reading on "latest" case studies, meds,
etc...
absurd...totally absurd!
Sure am glad *my doctors have read beyond those stats! Even *I have...
Best,
Judith
"The sooner we realize our responsibility for our own lives,
the sooner we can enter a new way of living."
Jonas Salk