When I got myelitis, I was an instructor for Octel Communications (now part
of Lucent Technologies). There was no way I could teach when I came back.
The company was great, and I immediately switched positions to be an
instructional designer. I can now work at home when I need to, and don't
have to be on my feet. I do miss the teaching sometimes, but this is fun
too. Let us know how the transition to the computer world pregresses. A
lot of what I do is involved in multi-media. Take care of yourself - Ann
> -----Original Message-----
> From: Kevin Wolfthal [SMTP:kwolfthal(AT)snet.net]
> Sent: Tuesday, February 02, 1999 10:59 PM
> To: tmic-list(AT)eskimo.com
> Subject: re: hi eveyone
>
> Hi Everyone!
>
> 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
>