Giles Moriarty
----------
From: Steve Cappelson
Sent: 21 March 1997 04:07
To: tmic-list(AT)eskimo.com
Subject: Re: My fireworks!
Linda922(AT)aol.com wrote:
>
> I am very new to this list and find the information, as well as questions,
> quite interesting!!
>
> If I may, I would like to share some of what I have learned during the years
> that I have had TM. I believe that it does relate to many questions that I
> have received in the mail recently.
>
> I got TM on July 4, 1981 after a virus. It started in my left foot as "pins
> and needles" and traveled up my left leg and then began the same way with my
> right leg. By the time I got to the ER, I had no feeling internally and was
> unable to void. Within 10 hours, I was paralyzed from right under my arms
to
> my toes.
>
> Movement returned somewhat gradually, leaving me with constant pain and
> numbness in legs (mostly from knees down). "Learned" to walk again but will
> never be able to walk any distance.
>
> Have had many exacerbations of disease over years. Most times, the
> reoccurrences "run their course" and then I'm back to *my* norm. None have
> reoccurred to the extent of the initial onset. I have never been paralyzed
> again, but I have experienced *much* worsening of pain and weakness in my
> legs. From what I have been told, this is not the *norm* for TM but can
> happen. When it is severe, I must take large doses of Prednisone.
>
> My neurologist is in Boston and is a specialist in Transverse Myelitis.
When
> I first began seeing him in 1982, half of his patients with TM were in
> wheelchairs. It was at that time that I found myself grateful that I had
> progressed to the extent that I had.
>
> I was told that my nerves would regenerate for up to 18 months after
> onset--no longer. Where I was at that point, I could expect to go no
> further--hopefully not worsen.
>
> Several people on the list have asked about the increasing of pain. My pain
> and numbness has gradually gotten worse over the years. Also my back pain.
> No one can say this is "normal." The norm is not known. Each case is
> different.
>
> Just recently, Bob Spielman mentioned <<I still have a deep, searing,
burning
> pain. >> I, too, have that type of pain. However, no pain medication has
> ever helped me. Tegretol and Klonopin were a combination of medications
that
> was finally found to work to ease the burning pain and feeling of tightness.
>
> The medications I am currently taking are: Tegretol 200 mg. 1 tablet 4
times
> a day;
> Klonopin 1 mg. 1 tablet twice a day; Imipramine HCL tabs 100 mg at bedtime;
> Levsinex Timecaps 1 capsule twice a day.
>
> Present condition:
> - Constant pain in both legs and feet
> - Constant numbness in both legs and feet
> - Weakness in both legs
> - Severe weakness in knees at times - will "give out" at times,
> causing fall or near fall
> - Problem with balance at times
> - Pain in lower back - varies in degree
> - Numbness internally - both vaginal and rectal
> - Pain in legs and back intensifies when standing or walking
> - Heat intensifies pain
>
> Please excuse the length of this email. If anything in my history is able
to
> help anyone, I'm thankful.
>
> I hope to learn from all of you.....and I promise, I won't be this
> *long-winded* always!!! Honest!! ;-)
>
> Linda
Linda,
Please forgive me for asking but have you ever spoken to your
neurologist about MS. Mine says I have a 50% chance of developing it
from the TM. Has it been ruled out for you?
Thanks,
Steve