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Greetings Linda,
I didn't have insurance with Plaza, sorry.
I'm sure the other Roger is probably a nice guy, since we Rogers have to stick
together.
I tried Lamictal for nerve pain, but it didn't seem
to help me much, and since it is such a dangerous drug, I went off it.
I've also tried Neurontin, Ultram, Zonegran, and Keppra for nerve
pain. The Neurontin knocked me out. I was so sleepy that I couldn't
function. The others didn't work, or at least not well. I am
now trying Lyrica, which seems to be helping. I'll know when I get to full
dosage.
Fatigue has also been a big factor with
me. I was original put on Provigil which helped a lot, but my
insurance company wouldn't pay for it (they say it was only indicated
for use in Narcolepsy). I am now on Amantadine three times a day, and
it helps some. But I got my neurologist to give me sample of Provigil
and I use it once a week on Saturdays when I have my busiest day of the week (I
volunteer at my church).
I looked up Sjogrens Syndrome and noted that
symptoms include dry mouth. I have had a problem with dry mouth for a
while, but thought it was a side effect of Cymbalta that I was taking prior to
starting the Lyrica. (My neuro thought the Lyrica would work better for
the nerve pain.) I've been off the Cymbalta for a week or so, and I still
have the dry mouth. (?????) I'm hoping that it will just go
away.
When I was having seizures, I would have them
sometime a couple of times a day. The drugs helped, but I had trouble
getting to therapeutic doses. When the Primidone finally worked I was
pretty much seizure free. When I had three seizures
on Memorial Day 1994 and couldn't drive home from my
parent's house, I became alarmed. I went to the emergency room three times
over the next three days and the seizures were stopped each time using
valium. My doctor finally agreed to an MRI and that was when the lesion was
discovered in my neck at C-2 to C-3. I was put on prendisone and sent
home. A few days later, I couldn't get out of bed and my doctor sent me by
air ambulance to Harbor View to have the suspected cancer removed. At
Harbor View they put me on higher power steroids and argued for three days on
whether my lesion was cancer or not. It was then that they decided it was
TM and then I was sent home. My left arm was paralysed for a while, but
with PT I was able to get most of the use back.
Well, I've gassed on for too long. So
I'll quit for now. Thanks for writing.
Roger in Kennewick, WA
----- Original Message -----
Sent: Tuesday, April 04, 2006 8:43
PM
Subject: Re: [TMIC] osteoporosis
Hi Roger,
Good to hear from you. First of all I notice you
are from Kennewick WA. I live in Bothell and worked at Plaza Ins for 31 years.
Did you have your insurance with Plaza and do you know Tom Allen?? Small world
if you do.
I actually had seizures prior to TM. I also have
Sjogrens Syndrome (an autoimmune disease I have been treated for since
1988) The seizures continued 3 years into TM. The doctors always related the
seizures to the autoimmune disease. I finally had the ambulatory 24-hour test
(fun) and it showed that I had a lot of seizure activity during the 24 hours.
Therefore I was put on Lamictal, which can be a very dangerous drug, but I was
put on it very slowly. I have tolerated it well. And have not had any more
seizures since the beginning of the med. Thank goodness. The doctors really
don't know for sure - but I had never had a seizure until I had the first
autoimmune disease (Sjorgrens). No answers, really. I have learned,
unfortunately, that if you have more than 2 seizures you are labled as having
epilepsy. Epilepsy only means several seizures during a short period of time.
Not one or two over a period of years. My doctors don't know any more than!
yours! Nice huh. Please write back - I'd like to know if you are the
same person we had insured all those years at Plaza Ins.
The best to you with your health
Linda (Cherpeski) Bothell, WA
P.S. How long have you had TM and where are your
lesions?
--------------
Original message --------------
From: "ROGER C PRATT"
<[EMAIL PROTECTED]>
Hi Linda, I don't post often, but read all the
posts everyday. I don't know how osteoporosis is for men, but I do
know about seizures. I had seizures for two years before my TM
diagnosis (none since). I was put on a number of medications (Febatol,
Tegretol, Dilantin, Depakote) which I had allergic reactions
to (rashes) when I tried to get to therapeutic dosages. I was
finally put on primidone, and that was discontinued when I was diagnosed
with TM. I have often wondered if the seizures were early signs of TM
since I only passed out on my first seizure and only had jerking seizures
from then on. Once I got steroids by IV for 3 days, the seizures
stopped. I've had muscle spasms off and on, but no seizures. My
doctors don't know (at least can't explain) what the relationship was
between the seizures and TM. Interesting question. Do your
doctors have any explanations.
All my best, Roger - Kennewick, WA
----- Original Message -----
Sent: Monday, April 03, 2006 9:29
PM
Subject: Re: [TMIC]
osteoporosis
Well Patti, your
post certainly made me think twice. I don't have an answer to your
question, but I do know research has come a long way in treating
osteoporosis. Do you know our ages, when TM came to live with us and
menopause are the same?
I have not had a bone density test and I was
having seizures for 2 years prior to being put on seizure medicine
(Lamictal) and had no idea that osteo could be caused by anti seizure
meds. I have to say now I am a little concerned. I have 2 doctor appts
coming up - I will have to ask, I guess to relieve my mind - or give me
something else to worry about : - )
Please let us know what the doctor
says.
Linda - Bothell, WA
--------------
Original message --------------
From: <[EMAIL PROTECTED]>
> I had a bone density test two weeks ago and now have an
appointment with an
> endocrinologist because of additional bone
loss. I've done some research and
> read on WebMD of the
possibility that osteo can be caused by anti seizure meds.
> I
haven't found any info on Neurontin/gabapenten regarding osteo.
>
I have been taking osteo meds since age 48 when a bone density test came
back
> abnormal. A tests at 50 showed no additional loss and at
52 I had improvement.
> TM and menopause happened simultaneously
at age 53, my density test at 54 showed
> no change. Now, at age
56 the numbers are dropping.
> I know menopause can be the
culprit, but do any of you know anything about anti
> seizure
meds and bone loss? What can the endocrinol! ! ogist help with (besides
> telling me to stop caffeine)?
>
> Patti -
Michigan
>
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