MRI tomorrow and ping Carole
Diane
Friday. I had them scheduled for the end of September, but I decided
that's foolish and I need to get them over with and find out what's
up. I wish I could get past this anxiety about "the tube". i have my
eye mask, and my 1 mg of xanax to take in the morning. Most helpful, I
think, is the fact that i scheduled the test for 7am. I'm not a
morning person, so I won't even be truly awake, especially not with a
mg of xanax in me, and I feel quite confident I'll sleep through it. I
am such a panty-waist.
Carole, I'd like to put some of krishna das's chants on my ipod, not
for the MRI, but for today to center me a bit better. can you
recommend one of his cd's that you think would be best?
thanks!
diane
Carole
> Carole, I'd like to put some of krishna das's chants on my ipod, not
> for the MRI, but for today to center me a bit better. can you
> recommend one of his cd's that you think would be best?
>
> thanks!
>
> diane
Ny favorite is Pilgrim Heart. It has Om Namah Shivaya on it which is
what I chanted on the operating table. My cardiologist tells me that I'm
the only person who ever sang through a heart cath :) But it kept me
calm. I also love his Live album and All One (if you just want to chant
Hare Krishna and not have to worry about concentrating on words). I love
sll of his chants :-))
Carole
E®!k \\/!sser
Good to have the MRI today. Í hope everything is allright.
Did you stop using Remicade? TNF alpha antagonists like Remicade and Enbrel
are suspect to cause (or trigger) several kinds of nervedisorders like MS.
regards,
Erik
( I developed MS during Enbrel treatment)
Diane
Here's the irony--they are using remicade now to treat MS, at least in
clinical trials. so go figure. I hope you're doing as well as you
can.
anyhow, the The mri was ridiculously easy, because it was a brand new
machine that, even though it’s not an “open MRI” was certainly more
open than any I’ve ever seen. (i think they call it a short bore
MRI). I think I would have been fine without the xanax, and then
would have been able to have a more productive day afterward (instead
of sleeping til 2!)
Although there are mirrors inside so you can see into the room, I
still opted to wear my sleep mask and I’d do that in the future as
well. I didn’t have to have contrast, so it was very short.
I hope the results are as insignificant as the test. Tomorrow is the
EMG. That should be a lot less fun.
If it's MS, then I guess the neuro and I will figure out what to do
about treatment with remicade or who knows what. i suppose it's
possible the remicade has actually been slowing the progress of MS
instead of causing it. if i do have MS, i doubt remicade is the cause
since my sister has MS and my brother has symptoms similar to mine,
and neither of them has ever had remicade or enbrel.
go figure.
and carole, thanks for the krishna das recommendations! i love his
stuff.
diane
Nann Bell
you yesterday & I hope the MRI went well. Best of luck with he EMG tomorrow!
And it sounds like a good thing that you moved it up - only you can know how
well a wait like that is working for you.
--
Nann
remove the Gator cheer to email me
Change everything. Love & forgive.
Kelly
and appear after 3 years to be permanent. There is no MS in my immediate
family although my dad's sister has MS (the neurologist seemed to think
though that mine is not actually MS although they are still checking
supposedly). The interesting thing was to see all the references on the
internet this time around - when I had this 3 years ago there was not near
as much. They are still mentioning the tnf's and warning about anyone who
has MS (can't find references about the testing of MS and remicade but am
still looking - would be interesting). The warnings
http://www.mult-sclerosis.org/news/Jan2002/EvenMoreOnArthritisDrugsAndMS.html
against using the tnf's is for people who have ms or ms like symptoms.
Interestingly enough one report I read suggested that some of the people had
many infections and it might be an infection link between the enbrel and ms
like symptoms (note I don't say MS but ms like symptoms - mine isn't MS but
it behaves like it).
For me the neurologist that I saw that specializes in biologics and their
effects said I was not eligible for any tnf's after this. She said rituxan
was being studied for MS and this would be her choice. Would be interesting
to see 3 years later if that would still be the case but since I saw her in
the states and paid $1500 for that diagnosis I am not about to repeat that
in a hurry for an updated opinion. My rd is adamant that I never go on a
tnf receptor and that is a rider on the trials for tnf receptors that the
drug companies are doing with him.
Let us know how it goes Diane - I am hoping for the very best - fingers
crossed. So glad the MRI went so well - might surprise you and the emg
won't be too bad too.
I will stress that this is a rare complication but tingling etc should be
watched - just like we would any other symptom such as rash etc. Don't
expect it - it really isn't common and isn't such a worry that I wouldn't
take this med again if you were generally not bothered by neuro problems.
Again majority of people get better in 3 - 5 months unless they had a
pre-disposition to MS already. Of the 1% or less that get this problem I
just happen to be the 1% that didn't get over it. Go figure. Also most
people see the side effect quite quickly - as you see in the article the guy
was only on enbrel 4 months. The neurologist was amazed I went 3 years and
then it was such a sudden effect - again maybe due to the overwhelming
amount of infections I had that year and the on and off again of taking the
enbrel.
Glad you are at least checking this out Diane - makes me feel better.
Kelly
"Diane" <dc...@aol.com> wrote in message
news:bbf01913-6d45-4df9...@k13g2000hse.googlegroups.com...
Nann Bell
(in message
<bbf01913-6d45-4df9...@k13g2000hse.googlegroups.com>):
> I hope the results are as insignificant as the test. Tomorrow is the
> EMG. That should be a lot less fun.
I hope that your results are insignificant, too.
But, it makes me chuckle a bit. The doc says "hopefully, they can get the
biopsy they want with next week's colonscopy and it will show nothing. heck,
at this point I'd like it to show somehing that we can treat and make better!
I'm tired of this! But I just told him I'm willing to wager any biopsy will
come back non-specific inflammation as it has before. The results should be
in before my RD appt. & my physical, both the second week of Sept. so i can
discuss this with both docs.
But, please, no MS for you.
Diane
know what to hope for you with regard to the colonoscopy! something
small and so curable as to be amusing. that's what i'll pray for.
kelly, i so appreciate your caring. can you remind me how your "MS-
like symptoms" started? i did have tingling a decade ago when i was
first on enbrel, and went through all this same workup--including
cerebral angiogram and temporal artery biopsy. i can't even remember
how those things were connected. the symptoms went away and the tests
showed nothing at the time. but altho my RA symptoms are under fairly
good control, my gait has gotten worse and worse and there's clearly
neuro involvement, thus the new battery of tests.
hugs all,
diane
Kelly
antibiotics finished. Took my Thursday night shot. Friday morning woke up
and put my foot on the floor and instantly got a pain around my middle about
waist level. My foot and ankle were tingly and numb. thought it was just
RA rib pain and took a shower to relax. By the time I was out of the shower
it was worse and thought maybe stroke (was moving upwards). Called
ambulance after talking to Nursing Helpline (a BC service that is excellent
and free) and immediately told my husband I wondered if it was the enbrel.
By the time I was to the hospital the entire ride side up to the waist was
tingly, numb and spasming. Incredibly painful. At the hospital mentioned
reaction to enbrel but was basically told "what - don't think so". Was sent
home after 4 hours of basic testing that showed nothing but with a
neurologist appointment for the end of the week and with demerol for pain.
Was back in 4 hours (after talking to enbrel nurse who said "nope doesn't
sound like that - there are no neurological problems with this") Was in a
10 out of 10 pain at that point and would allow no one near me, could not
stand, any touch was incredible - the tingly, numbness was incredibly
painful as was the spasming. the bladder was spasming so badly by then that
I could not go at all and was put on a catheter for the next 7 weeks. The
pain never did leave at that point and was on demerol and gravol the whole
week in the hospital every 4 hours with very little pain relief. Left in a
wheelchair unable to stand on my own having had a cat scan, mri (which they
read wrong I am sure - the second neurologist saw things the other didn't),
spinal, tested for every infectious thing they could think of. The one
thing they should of done in retrospect was 3 day steroid drip of 1000 mg
which was done several weeks late and too late. That might have helped.
It was different than MS but I am left with several things the same (and
more if I am not on the gabapentin and keppra). Heat, sudden cold,
infection all bother my leg and central nervous system. I have trouble with
gait and balance - worse of course if my leg is spasming which it does when
the above bother me. My balance is not great despite the neuro physio rehab
exercises although those have improved it a lot. sexual problems have for
the most past disapearred.
hope that helps.
kelly
"Diane" <dc...@aol.com> wrote in message
news:af2208ac-becf-47a8...@a1g2000hsb.googlegroups.com...
Donna G.
Diane,
Glad you made it through the MRI ok and hope the news is good.
Hope the EMG turns out to not be as bad as you think as well. Although
I know that test is never fun.
You are wise to get this all taken care of and to answer the questions
that hang out there about your health.
Prayers followed you today and will follow you again through the EMG
stuff.
Best wishes!
.
.
.
.
Donna
.
.
.
.
1.) ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......
2.) J.K.M.A.
Carole
> and carole, thanks for the krishna das recommendations! i love his
> stuff.
If you ever get a chance to go to kirtan, he's AMAZING :)))) I never
miss him when he comes to Seattle. Last year he did Vancouver, BC on
Friday and Seattle on Sunday and I went to both :) BTW, he thinks I
have beautiful hair :-))))))))))))
Carole
Diane
when you were going through all of that and how scary it was. how no
one could find any answers. no wonder you are so firm about the tnf
receptor meds. i am so glad you've recovered to the degree you have.
diane
Harvey R. Stone
"Donna G." <DKGB...@webtv.net> wrote in message
news:20710-48...@storefull-3111.bay.webtv.net...
>
>
>
>
> Diane,
>
>
> Glad you made it through the MRI ok and hope the news is good.
>
> Hope the EMG turns out to not be as bad as you think as well. Although
> I know that test is never fun.
>
> You are wise to get this all taken care of and to answer the questions
> that hang out there about your health.
>
> Prayers followed you today and will follow you again through the EMG
> stuff.
>
> Best wishes!
> .
My thoughts and prayers also.... I have enjoyed reading the discussion and
clear thinking by all that took part in this discussion. It makes me think
of Diane from Florida who is no longer with us,,,,, I don't know why...
Harv
Kelly
and getting emails from them. Honestly that was such a nightmare 6 months
until I got some answers and some med ideas. I fight this Diane - they know
it was from the tnf receptor - no doubt at all in anyone of the specialists
minds now and it affects everything I take from now on unfortunately. I am
scared but also informed on the tnf receptors. I would not raise an alarm -
I would not have taken back the 3 years I was on them but would take back
the side effect in a moment. My side effects were really rare and the fact
that they are permanent is even more of a small percentage.
Glad you are getting it checked. Being on a tnf receptor and being informed
is great if the rd and neurologist know what to look for. Diane Diwitt was
on enbrel and had ms but she was one of the few that was not taken off.
They monitored her mri's very carefully. She helped me immensely through
all that. Can't tell you how many phone calls there were between Florida
and BC, Canada. I have emailed her husband a couple of times and he and her
son are doing well. Maybe one day I will finally meet him. wish I could
have met Diane although I felt we had met through it all.
Anyhow thanks for getting checked - I feel better that the elephant is not
standing in the middle of the room getting in the way. Now you can tell him
to get the heck out of the way that you know he is there. Always easier to
kick something out when you know they aren't invisible - easier to see!
Kelly
"Diane" <dc...@aol.com> wrote in message
news:dfbe0dee-de37-4681...@x35g2000hsb.googlegroups.com...
Nann Bell
(in message
<af2208ac-becf-47a8...@a1g2000hsb.googlegroups.com>):
> nann, how are you feeling? any more episodes of the vomiting? i don't
> know what to hope for you with regard to the colonoscopy! something
> small and so curable as to be amusing. that's what i'll pray for.
no more vomiting. Usually it's 3-4 months between episodes. This last time
was really odd in having 2 episodes a week apart. Right now they don't know
enough to even have an idea of what triggers things. I really want some
ideas before the next episode, esp. as each one has been worse than the last
this calendar year. With my family's auto-immune history, they keep thinking
Crohn's, but I just don't fit the profile.
Nann Bell
(in message <Lpqrk.20450$uE5....@flpi144.ffdc.sbc.com>):
> My thoughts and prayers also.... I have enjoyed reading the discussion and
> clear thinking by all that took part in this discussion. It makes me think
> of Diane from Florida who is no longer with us,,,,, I don't know why...
> Harv
It's that MS & RA combination and complications from Enbrel.... and the fact
that she was such a neat person & is so missed around here. I pray her
family is doing well.
Nann Bell
imagine how frightening it must have been for all of you. I am so glad we
still have you with us!
Harvey R. Stone
"Nann Bell" <hanbell...@earthlink.net> wrote in message
news:0001HW.C4D44234...@news.east.earthlink.net...
> On Thu, 21 Aug 2008 23:30:49 -0400, Harvey R. Stone wrote
> (in message <Lpqrk.20450$uE5....@flpi144.ffdc.sbc.com>):
>
>> My thoughts and prayers also.... I have enjoyed reading the discussion
>> and
>> clear thinking by all that took part in this discussion. It makes me
>> think
>> of Diane from Florida who is no longer with us,,,,, I don't know why...
>> Harv
>
> It's that MS & RA combination and complications from Enbrel.... and the
> fact
> that she was such a neat person & is so missed around here. I pray her
> family is doing well.
>
> --
> Nann
Thank you Nann,,,, You are the best,,,, very best. I was tired and not
thinking well but not worrying about it when people like you are there.
Harv
Kelly
along. I think that the fact that she had been in the hospital sick for the
year before helped in a way - towards the end it was apparent that it was
going to take a miracle for her to be home and she was tired. The
overwhelming series of infections just kept attacking. I opened my email
box of correspondence the other day and found the emails back and forth from
when I first had my complications and was back from the hospital. We
laughed as much as we cried - she kept me positive.
Kelly
"Nann Bell" <hanbell...@earthlink.net> wrote in message
news:0001HW.C4D44234...@news.east.earthlink.net...
Kelly
have run on you they could find just one link to something.
Hoping the next episode is at least 6 years away - does that help?? I will
put the "positive thinking" into play - surely the ASA prayer machine can do
that much.
Kelly
"Nann Bell" <hanbell...@earthlink.net> wrote in message
news:0001HW.C4D44233...@news.east.earthlink.net...
Donna G.
So, Diane, how did you survive the EMG stuff? Were they able to give
you the results today???
Diane
couple of the needles unlike the last couple of times when i got the
whole treatment. the nerve conduction part lasted more than an hour,
but it wasn't too awful. the neurologist who "needled" me said they
can't tell anything about MS from that test, just that i have
peripheral neuropathy and i'll be in for a bunch of bloodwork in a
couple of weeks when i see the doc again. i don't know the mri
results. i'll find out then. he said they never do find the cause of
PN in 50% of the cases.
thanks for thinking of me.
diane
Nann Bell
as severe. I managed to hold off throwing up for some time, until things
felt much better and I decided to risk taking some medicine for the headache
my foodless & medicineless day had created. Well, when he asks me Wednesday
if i've had any more trouble, I'll have a story to tell him this time. Now,
after many short naps all evening, trying to feel better, and this killer
headache & killer joints (back to back fronts coming through again), I don't
know if I'll sleep any tonight! At least I didn't have to go to the
hospital, though I wondered a few times. I just absolutely didn't want to
have to explain this to another doctor when I felt lousy enough to make
taking difficult.
We've got a family reunion next weekend out in Oklahoma - one side of my
mother's family. Please, please, please let me feel ok for all of that! I
promise to be careful abut what I eat, if that will help!
And yes, it seems they should have an answer by now, but my body isn't
cooperating! I really do think they've been doing everything reasonable to
figure this out. The worsening GI symptoms may mean something has developed
to a point where it can be diagnosed now. I hope, I hope.
--
Nann
remove the Gator cheer to email me
Change everything. Love & forgive.
On Fri, 22 Aug 2008 11:17:41 -0400, Kelly wrote
(in message <pMArk.105302$nD.51222@pd7urf1no>):
Donna G.
Maybe keeping a journal of when these things hit and what the weather is
like, what you have been eating, etc to see if you can find any common
clues?
Donna G.
{{{{{{{{{{{ Nann }}}}}}}}}}}}
Sounds simply miserable!!! I just hate that you continue to go through
these nasty spells. I sure hope they can sort this out sooner rather
than later! Do you think they will look at your immune globulin stuff
again? So much of what you go through still fits so much of the CVID
stuff that is in the description. I don't wish that diagnoses for you,
but gotta at least bring it up again.
Prayers that at least next weekend you can get to enjoy time with family
and time away from home!
Does the heat impact things at all with your intestinal stuff?
DeeTee
DeeTee
"Nann Bell" <hanbell...@earthlink.net> wrote in message
news:0001HW.C4D527ED...@news.east.earthlink.net...
Nann Bell
(in message <20709-48A...@storefull-3111.bay.webtv.net>):
> {{{{{{{{{{{ Nann }}}}}}}}}}}}
>
>
> Sounds simply miserable!!! I just hate that you continue to go through
> these nasty spells. I sure hope they can sort this out sooner rather
> than later! Do you think they will look at your immune globulin stuff
> again? So much of what you go through still fits so much of the CVID
> stuff that is in the description. I don't wish that diagnoses for you,
> but gotta at least bring it up again.
>
> Prayers that at least next weekend you can get to enjoy time with family
> and time away from home!
>
> Does the heat impact things at all with your intestinal stuff?
>
>
> Donna
> .
> .
> .
> .
> 1.) ANGELS EXIST, but some times, since they don't all have wings, we
> call them FRIENDS......
>
>
> 2.) J.K.M.A.
>
The last time they ran my IG levels they had returned to normal post Enbrel
so I don't really think they need to run them again. The big question for
now is whether it's the inflmmation causing some narrowing of the small
intestine or if it's caused by some scar tissue from my hysterectomy. If the
inflammation comes back as something treatable this time, we can pursue that
and see if it takes care of things. If not, I'm not sure which way we'll
turn. I think this surgeon will pursue things further regardless when he
hears I've had another episode.
Mike asked the current doc what makes the obstruction flare up and he just
shrugged. hey can pursue finding out what causes it overall, but may never
know what leads to specific flares. I can tell you the meals I ate just
before the last three episodes varied widely so it isn't a particular food.
I don't think the heat impacts things, but now you have me wondering if it's
worse with weather changes when my joints are worse. in my thinking that
would point towards inflammation as the culprit. I can't remember now if any
of the past episodes fit that barometric pressure change scenario.
My next RD appt is the second weekk of Sept. followed by a physical with my
PCP the next day. (My PCP and this surgeon are in the same practice and they
use electronic charting, which makes it really nice for them sharing info and
talking about things.) I expect both appts. to have some interesting
discussions. That reminds me - if they can get the biopsy next Wed., I think
I want a copy of the results to go to my RD. sigh...... never a dull moment,
is it? Sometimes I have to remind myself that if I'd been born in another
eraI would have been dead 20 or more years ago.
Nann Bell
past. How's that for positive reinforcement for following up on what your
doctor wanted? It would be frustrating to have PN and not know the cause
though.
--
Nann
remove the Gator cheer to email me
Change everything. Love & forgive.
On Fri, 22 Aug 2008 22:35:19 -0400, Diane wrote
(in message
<d3e01a96-1117-44f5...@8g2000hse.googlegroups.com>):
Nann Bell
(in message <20709-48A...@storefull-3111.bay.webtv.net>):
>
>
>
> Maybe keeping a journal of when these things hit and what the weather is
> like, what you have been eating, etc to see if you can find any common
> clues?
>
I think I'll give that a try - at least I'll feel like I'm doing something!
I wondered in the past if it might be coneected to my milk allergy, but there
have been times when I had nothing with milk in it for several days before.
The time I landed in the hospital I'd had a veggie pizza (did have milk in
the cheese) for dinner the night before with the leftovers for lunch just
before starting to get sick. This time, I had venison steak, with that good
roasted cauliflower (with extra garlic added - we love garlic) and sesame
green beans for dinner the night before. Meals don't get much different.
Diane
i hope you're feeling well for the reunion.
hugs, diane
Squirrely
glad it was easier than you thought it would be. I am happy about that for
you. Let us know when you find out the results of the MRI. You take care and
rest up now.
--
Love and hugs to all
Love Squirrely
Donna G.
Nann,
I know the last time they ran your Ig levels, they were normal, but it
would be worth at least mentioning and if they do send you for blood
work, can't hurt to have them drawn again just to check! You never know
what may turn up.
.
.
.
.
Donna G.
>Sometimes I have to remind myself that >if I'd been born in another era
I would >have been dead 20 or more years ago.
Yeah, you are so right. I remember several years ago when I went
through a really rough patch with my lung stuff, that my lung doctor
told me that all the other doctors in the hospital thought I would never
live to see my 40th birthday. Thank heavens he never gave up on me and
he worked hard to get things under better control and with a lot of help
from modern medicine, I am still plugging along, albeit slower and
grumpier, I am definitely still plugging along!!! LOL Thank goodness
for modern medicine and all the new things on the horizon in this
era!!!
.
.
.
.
Nann Bell
(in message <25905-48B...@storefull-3112.bay.webtv.net>):
> I know the last time they ran your Ig levels, they were normal, but it
> would be worth at least mentioning and if they do send you for blood
> work, can't hurt to have them drawn again just to check! You never know
> what may turn up.
>
Yes, m'am. heehee. You make me miss Mama Char even more!
I'll keep it in mind when I see my regular docs next month. And I'll do
more research, too. All this inflammatory bowel disease of unknown orign
seems to point to a misdirected immune system (sound familiar?). But I'll
check it out more.
But...... I hate, hate, HATE the statements from the place in CA that does
the IG levels for the Petoskey crowd. While they're waiting for BC to pay, I
get these statements that are nothing but page afer page of "flow cytometry
subset such-and-such". And i do mean pages - when they did all three IG
levels thes ran 12 pages, IGG alone was 6 pages.
Nann Bell
(in message
<21884755-e0db-4574...@25g2000hsx.googlegroups.com>):
> oh no, nann. this is getting kind of scary, not to mention disruptive.
> i hope you're feeling well for the reunion.
>
> hugs, diane
I must admit, I'm thinking I'm update my medical history sheet with more
details just in case I get sick in OK. After all, if I'm as prepared as
possible then Murphy's Law says nothing will happen, right? I'll get all the
stuff Mike could tell them here down on paper so I won't have to say it if
I'm sick.
Meanwhile, I'm keeping my diet easy to digest for now, though that means I'm
light on the veggies which (sob!) are coming in fresh here now! We'll see
what developswith Wednesday's testing.
Nann Bell
(in message <25906-48B...@storefull-3112.bay.webtv.net>):
> Yeah, you are so right. I remember several years ago when I went
> through a really rough patch with my lung stuff, that my lung doctor
> told me that all the other doctors in the hospital thought I would never
> live to see my 40th birthday.
Isn't it funny the things we are glad the doctors never told us? My first RD
told me once that when he first saw me, he really thought I'd be wheelchair
bound within a year. he was pleased when I blurted out that I had too much
to do to let that happen! but I've always been glad he didn't mention it
until he was telling me how pleased he was that *hadn't* happened.