I find this list very helpful and informative when trying to cope with the various symptoms that
no-one else really understands. What I can do without is being told that I stand a very high
chance of going on to develop MS! There is no advantage to finding out horrors like that, it's just
one more thing to play on my mind. I'm not sure what benefit your neuro thought there would be
in you knowing that you stand a high risk of developing MS - am I being oversensitive? What
does everyone else think?
Debbie
UK
----------
From: wbartelli(AT)kuhnwitt.com[SMTP:wbartelli(AT)kuhnwitt.com]
Sent: Wednesday, August 06, 1997 20:53
To: tmic-list(AT)eskimo.com
Subject: RE> new subscriber
RE> new subscriber
To tmic-list(AT)eskimo.com
Tracey -- I don't know how long you've had TM but I just
went to a new neurologist a couple of days ago who told me
most people eventually recover -- but the extent of recovery
is uncertain. Some people recover 100%... others only have
a slight improvement. (I love the vague explanations that
go along with this disease!)
My symptoms began in mid-May and my neuro told me it was
still very early in the game to expect major improvements.
Unfortunately, there's no cure for this disease that I'm
aware of -- only medications to help make the symptoms more
bearable. And the type of medication needed seems to vary
from person to person. I take amitryptiline to help relieve
nerve pain in my legs and lower back. Physical therapy has
also helped me regain strength and increase my energy level.
I've also notice I feel better about myself in general due
to my exercise program.
I agree with your frustration in regards to people thinking
you seem OK from an outward appearance. I have a stressful
job which tends to aggrivate my symptoms but I don't feel
comfortable discussing it because to others, I appear
perfectly normal. I just tell myself I don't owe anyone
any explanations and my health comes first. Sometimes that
works and other times, I still feel guilty!
Hang in there -- Whitney
P.S. The scary piece of information I received from my Dr.
was that 70%-80% of people with TM (especially women who are
struck with TM in our age group -- late 20's --) go on to
develop MS. I'm looking into that statistic now... it is
very alarming to me! Has anyone else out there heard about
this possibility??
--------------------------------------
Date: 8/6/97 7:47 AM
To: wbartelli
From: tmic-list(AT)eskimo.com
Hi, I've just subscribed, because I would like to find out
more information
on Transverse Myelitis. My story- I was 27 when I was
diagnosed with
Transverse Myelitis after becoming paralysed from just under
my breasts
down. It was a terribly scary time, but after a fairly brief
period of
time, was walking again and trying to get on with my life.
What I want to
know is how other sufferers deal with the on-going symptoms,
and if there
is any solution or cure. I still self-catheterise and have
to take
medication so that I don't "leak" between catheterising. My
genitals are
numb, so sex isn't great. I get tired. I don't know whether
this is a
symptom or just a by product of life. Can anyone share their
syptoms with
me so that I know what is normal and what is not. My
neurologist stopped
wanting to see me as soon as I was out of the hospital,
telling me that
whatever improvement I made in the first year and a half
after getting
Transverse Myelitis was as good as I was going to get. Is
this true? Have
other sufferers recovered fully after many years? Please let
me know. Do
other sufferers just feel like crying sometimes, and feel
guilty about it
because to everyone around you you look find and whole?
- Tracey
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