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> From: JHarper33(AT)aol.com Mary mlmohm(AT)prodigy.net
> To: tmic-list(AT)eskimo.com
> Subject: Re: steriods
> Date: Friday, October 10, 1997 5:44 PM
>
> In a message dated 97-10-10 11:23:26 EDT, you write:
>
> > Hello again,
> > Now I have more questions. I was given mega doses of steriods
believing
> > it was it was to srink the swelling of the spinal cord or the myelon.
> > Is this correct? Also, no one ever mentioned that TM could be fatal.
I
> > just learned from this group that it's possible to have flaire ups.
My
> > neurologist had told me that it is more rare than TM itself. He's a
Dr.
> > from the old school I guess, doesn't do computers. He was more
concerded
> > about my weight gain.Which I blame on depression and being scared.
Like
> > I have stated in the past, I'm totaly paralized from t2 down for two
> > yrs. now, has anyone had a flare up after this long and from this
> > elevation and died? I'm not terrified yet, but I,m thinking of
seeking
> > another neurologist who may be more knowledgable on TM. Please give
me
> > some feedback soon. I'd like to know the warning signs, if any, and
any
> > good doctors in the Texas panhandle area, Amarillo is where I was
> > treated before. Maybe Lubbock, has anyone been treated there?
> >
> > Sharon
> >
>
> Sharon,
>
> I just read your post and Debbie's response. What Debbie said is what I
have
> been told and read also. I just wanted to comment that the weight gain is
> affected a great deal, of course, by less activity. I think I lost a
little
> weight the first week or so of TM because my appetite was way off and I
felt
> nauseous. But I have gained since then, at least partly to being less
active,
> and I know that must contribute to the stress the body is already under
and
> doesn't help overall health. Walking alone is a problem since my knees
> sometimes give out -- I have to have someone nearby to grab onto just in
> case. Some exercises seem to cause the muscles to spasm more. I'm not in
a
> wheelchair, but I imagine that would make it all the harder to get
sufficient
> exercise. Of course, if I could eliminate soft drinks, sweets, and
seconds,
> that would help a lot. :) I keep telling myself that if I just cut down,
I
> won't have to give them up completely, yet at the end of the day, I can
see I
> haven't cut down at all. In fact, the more I think I need to cut down,
the
> more I seem to want all those things I shouldn't have, or more than I
should
> have. No excuse; I just like food too much. But I'm going to have to do
> something drastic here, soon.
>
> Also, I think I've read that long term steroid use can cause weight gain.
I
> don't know if you're still on steroids (I was only on for three days),
but if
> you are, that might be a factor.
>
> I haven't really read or heard much about TM and fatality. I guess it
would
> depend on what area of the spinal cord and what nerves were affected, but
> I've never heard of it affecting the heart, for instance. I guess maybe
it
> could. I have heard of some with neurological problems whose breathing
was
> affected; our host for this list, Jim Lubin, is on a portable respirator.
> (Jim, is that because it affected your diaphragm? Or the nerves to the
lungs
> themselves? If you don't mind my asking. :)) I also heard of one lady
with TM
> who died with a blood clot in her lung, but I don't know if that had
anything
> to do with TM or not. I think it is as Debbie said; I don't think TM
itself
> usually kills people, (although I think Jim said once that he had "coded"
> about four times, but I think that was at the onset -- Jim, correct me if
I'm
> wrong. Yours is the severest case I know of) but untreated complications
> could develop into bigger problems, so it is good to keep in good general
> health. But I think TM usually isn't something you die from, but, rather,
it
> is something you have to learn to live with. I hope this last paragraph
makes
> sense; I've been just "thinking out loud" and rambling.
>
> I have been concerned about relapses also, as I have had symptoms flare
up
> from time to time, but never as severely as the initial onset. One dr.
didn't
> seem to be as concerned about loss of feeling as loss of function, and I
> guess that's what I've been going by. My legs, arm, and back sometimes
> experience more pain or numbness than other times, and they don't always
work
> like they used to. But at my initial onset I couldn't walk without
assistance
> and couldn't use my left hand for much, and I've never had a flare-up to
that
> degree again. If I do, I'm heading back to the emergency room! I also had
> some symptoms creep up that I was concerned about, and the neurologist
said
> he thought the TM "altered" my nervous system, making it more sensitive
to
> stimuli, so it reacted more. He put me on carbamazepine for a while,
which is
> an anti-seizure medication, but he said it was also useful to quiet down
ot
> calm the nervous system. It did seem to help, but it made me drowsy, and
I
> was concerned about problems with long term usage, so he advised me to go
off
> it for a while to see what happened. As long as I think of these symptoms
as
> "just my nervous system acting up again" and try to go on about my
business
> as much as I can, it helps. But when I start thinking, "What if this is a
> relapse? What if it's worse than the first time? What if it's MS?", then
I'm
> a basket case. And, as Debbie said, lack of sleep, stress, other health
> factors all have an effect. We just had a kind of a busy, stressful few
> weeks, even though some of it was a happy stress (getting ready for
> out-of-town realtives to visit within a month of each other). I seemed to
do
> fairly okay, but after everything settled down again, I wasn't much use
to
> anyone for a few days.
>
> Hope these ramblings are of some help! :)
>
> Barbara