Good morning Jill,
I'm not taking anything at this time for the
burning, tingling feelings. I tried Lyrica and Cymbalta and both gave
severe diarrhea (uncontrollable). Both caused weight gain and I certainly
don't need that. My neuro doesn't seen to think my TM is anything to worry
about. He sees I am able to walk so he just says see me in 6 months and
that's it. When I try to explain my new aches and pains and other symptoms
he says get better control of your diabetes and you will do fine.
Sometimes I think what's the use of even
going to the Dr. My lesion is at the C 2-3 level. I can't take the
heat since TM came along. I walk unassisted but have trouble with
balance. I stumble and stagger.
Hope today is a better day.
Marie in sunny Fl
- Original Message -
From:
Trudy
To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com
Sent: Wednesday, August 09, 2006 9:22
AM
Subject: RE: [TMIC] Crazy Question
Jill
I have had TM
for four years and Barbara describes it exactly as I have experienced it. And
Tegretol amost did me in. My neuro was on vacation and when she got back I was
in a very, very bad way! My liver started shutting down. Baclofen did nothing
for me. I am now on Lyrica the latest drug of choice very similar to
Neurontin. I too have that worry of TM turning into MS at any time. I have
experienced flare ups at times also.
Trudy
From: [EMAIL PROTECTED]
[mailto:[EMAIL PROTECTED] Sent: Tuesday, August 08, 2006 8:55
AMTo:
[EMAIL PROTECTED]; tmic-list@eskimo.comSubject: Re: [TMIC] Crazy
Question
Yes, it's very
normal to have little flare-ups. I would often fear another attack was coming
on during the first year or two, but in my case, it never got quite to the
extent the first attack reached. I was seeing my neuro often the first several
months and he would assure me that it was just a flare-up. He said that the TM
affects the nervous system in such a way that it's like it is oversensitive to
stimuli, so even things like not getting enough sleep or having a cold or
having stress (even "good" stress, like getting ready for company to come)
could make symptoms flare up a bit. But some times there was no reason that I
knew of -- things would just get worse for a while. Even now, almost 11 years
later, though I've kind of reached a plateau, there will be some days when
I'll wonder what in the world is going on with me. I kind of think of it as
riding the waves (though I'm not surfer and can't even swim :-) ) -- but I try
to tell myself, "This is just a flare-up -- just ride it out for a while and
things will be normal again." Of course, after TM hits, "normal" is different
from what it was before anyway. :-)
That said, though,
don't hesitate to call your dr. if things are flaring up to the point where it
is scaring you. And ask about different medications -- Kathryn mentioned
Baclofen. That didn't do much for me, but it helps a lot of people. I was on
Tegretol for a while -- my neuro said it was used for epilepsy patients but
had a "quieting effect" on the nervous system in general, so was sometimes
used for TM patients. It really did help, but they have to check your liver
functions often when you're on it. I decided to get off of it because I was
afraid of long-tern liver damage (though that may be unfounded, I don't know).
But I wouldn't hesitate to try it again if I felt I needed it. We all have
different body chemistries and different things, or different combinations of
things, will be helpful to different people.
Barbara
H.
http://barbarah.wordpress.com/
In a message dated
8/7/2006 11:16:36 PM Eastern Standard Time, [EMAIL PROTECTED]
writes:
Although I feel
I'm VERY fortunate to be able to walk unassisted, I feel like I have "little
flare-ups" from time to time with my left leg and right foot going numb and
even feeling like a raw/burning feeling. Is that
normal?
I also feel like a
tingly feeling in my head sometimes?
I don't know if
it's just driving me crazy and I need an ativan or is it just the TM
reminding me that it's there lurking and ready to come back or even turn
into MS.
This has been for
about a week or two now.
I was diagnosed in
Dec. 2005 and have made great strides since then thank
God.
Jill
36,
Chicago
T10-11
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