Re: RE> new subscriber
Kevin Hasegawa (khase(AT)gte.net)
Thu, 07 Aug 1997 17:33:26 -0700
wbartelli(AT)kuhnwitt.com wrote:
>
> 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
Hi I was told by a neurologist that does a lot of research in the area
of MS that, there is a 70% chance that people suffering from TM may have
MS later in their life.