Sjogrens
Stirling
me to have one done but my GP, opthalmologist and even the rheumy himself
said that after going through the biopsy and being diagnosed, there is
nothing more they could do that they aren't already, i.e. take Plaquenil.
I'm going to decline but just wondered if anyone else has been that route.
Thanks, Mare in Canada
RickMo3
said that after going through the biopsy and being diagnosed, there is
nothing more they could do that they aren't already, i.e. take Plaquenil.
I'm going to decline but just wondered if anyone else has been that route>>
I agree that the lip biopsy is a total waste of time and money.
You already know you have it, you're being treated symptomatically and with
Plaquenil which is all they can do... why bother?
There is nothing to be gained unles you're the lab doing the test.
Moe
******Half Full, Half M.T.******
Moe
Stirling
Moe. Hugs, Mare in Ottawa
RickMo3 wrote in message <19990924115952...@ng-ch1.aol.com>...
Jseyller1
Sjogren's. It is a total waste of time and money and the pain alone would keep
me from doing it when it isn't even necessary.
JoLynn
-----------
"Find some good in everybody and perhaps
everybody will find some good in you."
http://users.tp.net/tonym/jolynnFrame1Source1.htm
Stirling
more pain I don't need. Thanks, Mare in Ottawa
Jseyller1 wrote in message <19990924130431...@ng-fc1.aol.com>...
Katka3
Why a lip biopsy? I had a blood test that indicated I could have it, among
other things.
Kathi
a.k.a. The Lady of Loud Whining
Stirling
you're right. Both my rheumy and opthalmologist said I had to have a litmus
(?) paper test and lip biopsy to dx SS. Go figure. Smiles, Mare in Ottawa
Katka3 wrote in message <19990924150013...@ng-fy1.aol.com>...
DAHoberg
>have
>Sjogren's. It is a total waste of time and money and the pain alone would
>keep
>me from doing it when it isn't even necessary
I had a biopsy and with the right amount of anesthesia, there was no pain at
all during the procedure. There was also very little pain while it was healing.
This is more of aan individual thing.
Hugs,
>My guess would be, about 1/3 the population has it, they just don't know it
>yet!
>Within my own little world I know (20!) people who have
>it. And not just because I met them on the net from a support group, these
>are neighbors, co-workers, relatives, etc.>
In my own opinion, this validates what I have been relling people time again
about this disease! We need to be continually checked over and over again even
if it is done with the same tests to see if an undiagnosed doesn't show up on
blood tests later on down the line. The AMA has warned Drs. time and again that
FMS has been used as a label when the patient could actually have a disease
which is cureable but potencially fatal if not detected and treated in time.
Hepatitis is a good example of this.
Hugs,
>My guess would be, about 1/3 the population has it, they just don't know it
>yet!
>Within my own little world I know (20!) people who have
>it. And not just because I met them on the net from a support group, these
>are neighbors, co-workers, relatives, etc.>
In my own opinion, this validates what I have been relling people time again
about this disease! We need to be continually checked over and over again even
if it is done with the same tests to see if an undiagnosed doesn't show up on
blood tests later on down the line. The AMA has warned Drs. time and again that
FMS has been used as a label when the patient could actually have a disease
which is cureable but potencially fatal if not detected and treated in time.
Hepatitis is a good example of this.
Hugs,
Kris (whose rather intelligent Border Collie is looking for a website about
information regarding the nutritional value of cats!) (o:
Address is SPAM blocked. ****Remove map.son from address.****
DAHoberg
another thread "Fibromyalgia Epidemic" and I forgot about it when I pushed the
copy button and accidently sent the message twice in the same reply thread!
<sigh!> Sorry!
Hugs,
Kris (Whose nick name is "Chinkapin". A Native American word for "nut"!)
WillisWay
The blood test didn't show it-they say it is only about 60% accurate. I also
have positive ANA, RF, and IgM.
Best wishes!
Kathy
Stirling
My rheumy said the usual tmt is Plaquenil. Hugs, Mare in Canada
WillisWay wrote in message <19990924204850...@ng-da1.aol.com>...
Katka3
Mixed connective tissue disease and they decided i have fibo.
Archer
What exactly is Sjogren's? And how is it pronounced? My mother was dx with
this in '78 and all she mentioned was something about dry skin, dry eyes, &
other dry mucous membrane areas and some kind of gook in her eyes that she
described as thick yellowish mucous. She said it was annoying but generally
being a stalwart, non-complaining person really never told me much about it. I
don't think she had any treatment for it other that using "natural tears" saline
drops in her eyes.
Thanks, Jo
Stirling wrote:
> Has anyone had a lip biopsy to diagnose Sjogren's Syndrome? My rheumy wants
> me to have one done but my GP, opthalmologist and even the rheumy himself
> said that after going through the biopsy and being diagnosed, there is
> nothing more they could do that they aren't already, i.e. take Plaquenil.
> I'm going to decline but just wondered if anyone else has been that route.
> Thanks, Mare in Canada
--
Remove 411 from my email address to reply to me directly
Stirling
three months ago and undiagnosed a few weeks ago. Geez, go figure!!
Smiles, Mare
Katka3 wrote in message <19990924235308...@ng-cd1.aol.com>...
Deborah
Stirling
< Mare, What exactly is Sjogren's? And how is it pronounced? My mother
was dx with this in '78 and all she mentioned was something about dry skin,
dry eyes, & other dry mucous membrane areas and some kind of gook in her
eyes that she described as thick yellowish mucous. She said it was annoying
but generally being a stalwart, non-complaining person really never told me
much about it. I don't think she had any treatment for it other that using
"natural tears" saline drops in her eyes.>
Hi Jo. Sjogrens Syndrome is pronounced "show-grins". The funny thing is
that most people think it only means dry eyes and throat, etc., but it is
far more encompassing than that. Symptoms include joint pain and swelling,
difficulty in swallowing, raspy voice, fatigue, nauseousness, memory
problems, muscle weakness, etc. (Is this not similar to FM or what?) As I
understand it, the only treatment is Plaquenil. Is your Mom on this? I use
artificial tears but the relief only lasts about ten minutes. Is she seeing
an opthalmologist and rheumatologist? My opthalmologist did a
litmus/?Shirmer's test on my eyes and couldn't believe how dry they are. He
wants to do surgery to close the tear ducts so the tears (what tears??)
won't drain and I'm looking forward to that like a root canal!!!
Actually, the root canal is more appealing. (lol) Hope this helps. Hugs,
Mare in Ottawa
maryannb
Hi!
I was also told I have sjogrens...I have dry eyes, nose, mouth and
skin...it is very annoying....I also have arthritis..but they think it
is because of the crohns disease. My eyes are very dry....and
burning......I use artificial tears but they don't help much. There is
a new medication called Salagen. It makes your mucuos membranes moist.
It has some side effects though...hurt my stomach....and frequent
urination.....but all in all ...not too bad! I didn't know about the
placquenil....Thanks for the information! MaryAnn b
Stirling
maryannb wrote in message <37ED6B...@epix.net>...>Hi!
>
>I was also told I have sjogrens...I have dry eyes, nose, mouth and
>skin...it is very annoying....I also have arthritis..but they think it
>is because of the crohns disease. My eyes are very dry....and
>burning......I use artificial tears but they don't help much. There is
>a new medication called Salagen. It makes your mucuos membranes moist.
>It has some side effects though...hurt my stomach....and frequent
>urination.....but all in all ...not too bad! I didn't know about the
>placquenil....Thanks for the information! MaryAnn b
Hi MaryAnn. I didn't know about the Salagen. Thanks for that info. Were
you diagnosed by a rheumatologist and/or an opthalmologist? Both play a big
role in diagnosing SS and mine are just beginning the tests to confirm my
dx. Take care. Hugs, Mare
RickMo3
both. The salogen made me sweat 24/7 and was awful! The plug implant in my tear
ducts I'm sorry to say was a no-go as well. I'm just doomed tobe dry I guess.
And it ain't no fun at all!
Stirling
hear you didn't have good results, Moe. Hugs, Mare
RickMo3 wrote in message <19990925233119...@ng-fi1.aol.com>...
WillisWay
reaction after several years-I had corneal deposits. But after 3 weeks of not
taking Plaquenil-the deposits cleared up. They basically treat me for symptoms,
and watch me for further developments of connective tissue disease.
They also give salagen for the dryness. Hope this helps!
The best treatment for me at this point is Ultram and Neurontin.
Take care,
Kathy
Stirling
every 3 months for a field vision test? It's imperative. I'm glad that the
Ultram and Neurotin are helping you. Hugs, Mare
WillisWay wrote in message <19990926000131...@ng-cc1.aol.com>...
Stirling
Mary C wrote in message
<19990926202724...@ng-fb1.news.cs.com>...
>I hope you get better soon.
>
> It may be entirely different problem, but my scalded tongue sensation
turned
>out to be oral thrush. several drs and one dentist said it was a harmless
>white coating and not thrush. but one dentist and one allegist said it was
>thrush and a very bad case of it. I also had dry eyes, but that now has an
>entirely different, unrelated diagnosis.
>
>I treated the thrush with a homemade mouthwash of powdered Nystatin mixed
in a
>little water once or twice per day for almost two months and then switched
to
>a liquid nystatin formula made to treat babies for thrush. Eventually the
>stuff suddenly shed off and I have not had the burning tongue feeling, dry
>mouth, excessive thirst since.
>
>Like I said, it may not be same problem you have, but I wanted to share the
>info just in case.
>
>
>
>-Mary C
Stirling
Jseyller1 wrote in message <19990926051929...@ng-cr1.aol.com>...
>>So if the plug implant didn't work, did they "un" plug them again? Sorry
to
>>hear you didn't have good results, Moe. Hugs, Mare
>>
>
>The plugs didn't do me any good either. They plugged all 4 of the tear
ducts
>and when they didn't work after 6 or 7 months they took them out. Much
better
>than when they put them in.
Jseyller1
>
The only reason that mine hurt when they put the plugs in the upper ducts was
because they were using a size too big. When they realized this they got the
right size and it slid right in. It's not too bad.
gtip...@bellsouth.net
inserted the plugs. I felt nothing.
If any of you could share your Sjogren's experiences I would so appreciate
it. I have just started Plaquenil...so far no side effects. I was also
given Soma.
My Sjogren's diagnosis came after 7 years of CFS/FM.
Patricia
Jseyller1 wrote in message <19990927052436...@ng-cr1.aol.com>...
Jseyller1
My Sjogren's experience is at my web page in the blue hyperlinks below.
That is my story.
Stirling
surgery and that you didn't feel any pain. I'm having it done next week.
I've been on Plaquenil for a year and although I am usually very sensitive
to meds, I haven't had any side effects at all. I actually feel better on
it. You have to be seen regularly by an opthalmologist to have a field
vision test done every 3 months so while on the Plaquenil. This is very
important. Take care, Hugs, Mare in Canada
gtip...@bellsouth.net wrote in message <1sbI3.2761$e07....@news3.atl>...
>I had it done last week. My eyes were deadened with drops before they
>inserted the plugs. I felt nothing.
>
>If any of you could share your Sjogren's experiences I would so appreciate
>it. I have just started Plaquenil...so far no side effects. I was also
>given Soma.
>
>My Sjogren's diagnosis came after 7 years of CFS/FM.
>
>Patricia
>
>
>
>Jseyller1 wrote in message
<19990927052436...@ng-cr1.aol.com>...
>>>Did it hurt? I'm getting it done in two weeks. Cringing here, Mare
>>>
>>
>>The only reason that mine hurt when they put the plugs in the upper ducts
>was
>>because they were using a size too big. When they realized this they got
>the
>>right size and it slid right in. It's not too bad.
>>
>>
gtip...@bellsouth.net
months is imperative while on Pacquenil. I was so afraid to take it because
of the possible eye problems but the ophthalmologist told me I really had
little choice. Damaged eyes without it or possible damage with it. Not a
great choice, but I'm taking it.
What are those of you doing for pain. I had no luck with Neurotin, Soma, or
any of the trycylics such as Pamelor or Sinequan. I do best on 1 Ty 3 a day
along with Ultram and Celebrex. Getting that one Ty 3 a day is like having
the sky rain diamonds. Two doctors have refused, because they're afraid I
will get addicted. This makes me scream. I am a well educated, well read
person and I am not an addictive type. Any ideas from anyone will be
greatly appreciated.
Looking for to hearing from all you Sjogren's people.
Patricia
Stirling
being thorough and cautious by having you checked every 3 to 6 months. Good
luck on it. Smiles, Mare in Canada, aka Royal Sterling
gtip...@bellsouth.net wrote in message ...
thog...@my-deja.com
Archer <jabberw...@mediaone.net> wrote:
Hi Everybody,
If you think you might have Sjogren's Syndrome, or if you have lupus,
RA, or mixed connective tissue disease, PLEASE speak to your dr about
the possibility of having SS also. It frequently accompanies other
auto-immune diseases.
Good information on SS is available from the Sjogren's Syndrome
Foundation, Inc., 333 No. Broadway, Jericho, NY 11753. Phone:
1-800-475-6473.>
They will send you introductory, professionally written information if
you leave your name and address on their tape.
They publish an excellent newsletter called "The Moisture Seekers" and
also have a Sjogren's Syndrome handbook ($25??) which you can take with
you to uninformed drs. April was SS Awareness Month and armed with a
kits from the foundation, I stormed the battlements here and distributed
them to a dentist, eye dr, and GP. They may have ended up in the round
file, but at least I did my bit.
SS is a very serious, auto-immune disease which can cause damage not
just to your eyes and teeth, but to your skin and all other organs.
Also, people with SS are 44 times more likely to develop non-Hodgkins
lymphoma.
I am constantly appalled at the number of medical types who never heard
of SS. It's our mission to inform them!
Bunny
Mare,
> What exactly is Sjogren's? And how is it pronounced? My mother was
dx with
> this in '78 and all she mentioned was something about dry skin, dry
eyes, &
> other dry mucous membrane areas and some kind of gook in her eyes that
she
> described as thick yellowish mucous. She said it was annoying but
generally
> being a stalwart, non-complaining person really never told me much
about it. I
> don't think she had any treatment for it other that using "natural
tears" saline
> drops in her eyes.
> Thanks, Jo
>
> Stirling wrote:
>
> > Has anyone had a lip biopsy to diagnose Sjogren's Syndrome? My
rheumy wants
> > me to have one done but my GP, opthalmologist and even the rheumy
himself
> > said that after going through the biopsy and being diagnosed, there
is
> > nothing more they could do that they aren't already, i.e. take
Plaquenil.
> > I'm going to decline but just wondered if anyone else has been that
route.
> > Thanks, Mare in Canada
>
> --
> Remove 411 from my email address to reply to me directly
>
>
Sent via Deja.com http://www.deja.com/
Before you buy.
RickMo3
being thorough and cautious by having you checked every 3 to 6 months.>>
So true! I've been taking plaquenil for years and years and never once had
trouble with my eyes. I even admit that after the first couple years I stopped
getting hte eye test done so often and actually have it once a year now because
it was just too much trouble.
Of course I don't recommend that you follow my bad role-modeling but I thought
I'd just assure you that trouble is highly unlikely!!!
Moe
Carone
> Yes, I have definitely been told that seeing an ophthalmologist every 3 to 6
> months is imperative while on Pacquenil. I was so afraid to take it because
> of the possible eye problems but the ophthalmologist told me I really had
> little choice. Damaged eyes without it or possible damage with it. Not a
> great choice, but I'm taking it.
>
> What are those of you doing for pain. I had no luck with Neurotin, Soma, or
> any of the trycylics such as Pamelor or Sinequan. I do best on 1 Ty 3 a day
> along with Ultram and Celebrex. Getting that one Ty 3 a day is like having
> the sky rain diamonds. Two doctors have refused, because they're afraid I
> will get addicted. This makes me scream. I am a well educated, well read
> person and I am not an addictive type. Any ideas from anyone will be
> greatly appreciated.
>
> Looking for to hearing from all you Sjogren's people.
>
> Patricia
Hi Patricia,
Here is a link from the Globe and Mail about the change in thinking for pain
relief. The Globe is one of *the* newpapers in Canada, so maybe your doc would
listen if you presented it for his/her review.
http://www.GlobeAndMail.CA/hubs/health.html
--
Carone aka Carolyn Gregg in Canada. This address is spam blocked. Please use
car...@home.com
Czarina of the Clavichord
gtip...@bellsouth.net
I had read that Sjogren's people were 44 times more likely to get lymphoma.
I asked my rhuemie, and he said that was based on a study done by one
researcher in the 60's, and it had never been replicated. I surely do hope
he is right.
Patricia
thog...@my-deja.com
<gtip...@bellsouth.net> wrote:
Patricia -
The 44 bit is in the Merck Manual and my old dr at home said that this
applied to the general population. The SS handbook states that about 5%
of people with SS get lymphoma.
Hope your dr is right, too!
Bunny
gtip...@bellsouth.net
That is where I had gotten my info too. My doctor quoted the name of the
guy who did the study, but I was so freaked out with the whole thing, I
forgot. At any rate, I am going to think positively.
Do you use the online Merck? I have a printed one, but it is out of date,
and I was delighted to find it online and up to date.
Patricia
thog...@my-deja.com wrote in message <7t1ifm$b3e$1...@nnrp1.deja.com>...