This is my first message to the list. Have been a subscriber for a
short time, and it seems like a very supportive & helpful group.
Here is a a short version of my story. Sometime around 1988, I started
have discomfort in my lower left leg, mainly while driving. I went to
a chiropractor for several months. Never really had much relief. Once
evening, I got up from my seat at a movie theatre, and my left leg was
asleep, and tingling. I figured it would go away by the time I got
home, but it didn't...the tingling became pain, particularly in my left
foot. When I say pain, it was EXCRUCIATING. In fact, I could not
stand to have anything touch my foot, even a bedsheet. I had to sleep
on the floor. For a little background, I am a professional
photographer, and have had bouts of back spasms preceding this, for
several years. They would last for a few days to a week usually.
Well, after my leg went numb, I called the chiropractor. Her response
was: "well you know, I really don't know what I'm working on in your
case" and "sometimes things get worse before they get better". This
INFURIATED me, and I never went back to her. She should NOT have been
working on me if she had no idea what was wrong. Sometimes I think she
is the one who ruined my health.
Well, after getting a bone scan of my back and legs, and mri's of my
back. The doctors found nothing wrong. I also had lime disease tests,
test for hypothyroid, etc. etc. Nothing showed up. My left leg was now
very weak, and the pain persisted in my foot. I ended up having to
move back with my parents. After a month, I went back to work, on a
limited basis, but the pain in my foot was excruciating. I went to
Columbia Presybterian in NYC, and the neurologist told my I had Spinal
Spondylosis, and the best thing I could do was lose weight. I am 5'
11", and weighed about 225 lbs at the time. I went to a diet doctor and
lost about 40 lbs, but the pain persisted. I also found I was having a
lot of discomfort in the rectal area, and needed a 'donut' pillow to sit
on.
I gave up on doctors for some years, because I was able to do my job,
albeit on a limited basis, and just got too frustrated with not getting
any help from the doctors.
Around 1994, I decided to try and find an answer again. I went to
Yale-New Haven Hospital Neurology department for help. They ran many
tests on me..and came up with: Spinal Spondylosis (most likely) By the
way, much of the population has Spondylosis to a greater or lesser
degree...I think of it as a generic term for: "a back problem".
I continued going to Yale for tests for a few years, the condition
having stabilized to some degree. Still a lot of pain, but I was able
to walk without a cane, and actually started to feel a little better.
About 1997 (dates approximate) I started to feel worse. I went back to
Yale, and they did more tests. One of the tests involved having
electricity sent through the body from the back to the feet, and
measuring it's travel. This test showed a slowing of the nerve
transmission somewhere in the back. The neurologist gave me a diagnosis
of Transverse Myelitis. He explained that there was some demyelination
somewhere in my spinal nerves, but that it was 'negligible' (still
enought to cause me imbalance, loss of sensation in my feet...now in
both feet, and a lot of pain). This doctor is a specialist in Multiple
Sclerosis, but he felt I did not have MS. He also said that he saw one
new case of TM a month, and that many were much worse off than me.
Some having paralysis. He also felt that I had probably stabilized, but
there were no guarantees, and the best thing I could do was physical
therapy.
To bring things up to date. I have had many months of PT since then.
I've had a few falls, and then, last February, somebody hit my car in
the back while I was stopped. Since then, my balance is worse than
ever. I cannot walk without a cane, and the pain in my feet/legs, has
gotten worse. My neurologist told me the accident probably 'shook
things up' and that I may never regain my balance totally. This
accident happened when I was starting to feel a little better, doing my
job better, less pain, etc. Btw, probably the worst part of TM for me
has been the pain and loss of sensation in my feet. It has affected my
driving, where I had to have a special seat installed in my car, and I
kind of have to just place my feet and pivot my legs to hit the brakes &
gas properly...not easy but it works. The pain I have has been equated
with the peripheral neuropathy that people with diabetes get.
Now I don't think I can do my job much longer. As I mentioned, I'm a
professional photographer. I cannot use a camera without a tripod
anymore, (unless I can sit down). I have been taking computer courses
in web design, and maybe I'll be able to make a transition where I work,
or somewhere else.
I still wonder sometimes if I have received the correct diagnosis, but
in reading messages here, and information elsewhere, my symptoms seem to
be similar to many others. My neurologist has said that there are
medications being worked on for MS, and there may be an offshoot for TM
in a few years. I follow the medical information here with great
interest.
Well, I guess that's enough for now. I am interested in all feedback.
Thankyou,
Kevin Wolfthal