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