RE: TM - my story

Patrick Rofe (plrofe(AT)msn.com)
Wed, 2 Jul 97 00:59:23 UT

Dear Brian-
My name is Lizz and I've had TM for almost 2 years now. I too consider
myself lucky. I am able to walk and work full time. I'm in the restaurant
business so I have to be pretty mobile. Anyway, my symptoms are some what
similar to yours. It first started for me with numbness and tingling from my
chest down. My gate was even off. I went to the hospital at !:00 in the
afternoon and was paralyzed, and lost bladder function 12 hours later. My
neuro diagnosed me very quickly and I was treated with high doses of
Prednisone for almost a week. I was in the hospital for a month total. I was
also in pt and ot for awhile. I still have many side effects but still
consider myself very fortunate. I noticed that you went to U of M. I live in
Michigan. I was hospitalized in Huron Valley Hospital and Royal Oak Beaumont.
I had and still have a wonderful team of doctors if you need any.

Sincerely,
Lizz (plrofe(AT)msn.com)

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From: BriMK1(AT)aol.com
Sent: Sunday, June 29, 1997 9:13 PM
To: tmic-list(AT)eskimo.com
Subject: TM - my story

On June 3rd, 1997, I woke up with a numb right foot. I thought it was the
result of being hit in the shin quite hard the day before. Within the next
five days, the same feeling in my right foot had moved up the entire right
side of my body to my shoulders. Not really a numbness but more of an
insensitivity to hot and cold. Also, I could not differentiate between being
poked with a blunt object and being poked with a sharp object. They felt the
same to me. I thought it would just go away. When I awoke on June 9th, my
left leg had become very weak and I had great difficulty walking. Also, my
left arm had begun to spasm. I finally decided to go to the hospital that
night.

I had an MRI done that night which showed a lesion in my spine at C4. I was
admitted to the hospital and given intraveneous steroids for six hours each
night for four days (solu-medrol). Gradually I was well enough to walk with
a brace on my left foot. At that point I was discharged and given predisone
to wean me off of the steroids. Four days later I sought a second opinion
from a well known neurologist at U of M Hospital in Ann Arbor, MI. He said
that since my condition had stabilized that I should wait for three months,
then do another MRI to see if the lesion had changed. I have either TM or a
spinal cord tumor. No doctor has yet given me a firm diagnosis. The only
way to determine what I have is to do a biopsy and the doctors are not
willing to go that far at this point due to the dangerous location of the
"tumor". For now we are treating it as TM.

I sometimes wonder if I had gone to the hospital when the symptoms first
appeared, if I could have halted the progression of the disease. I guess I
will never know. From reading about other cases on line, I don't think my
case is as serious as the others. Today is June 29, 1997 and I am able to
walk, although shaky. I still have the insensitivity to temperature on the
right side of my body, and my left hand is asleep although I have full
control of it. If this is as bad as it gets, I'll take this and consider
myself lucky.

Thanks for letting me share my story with you.

Brian (BriMK1(AT)aol.com)