Transverse Myelitis
JOKERD1(AT)aol.com
Sun, 18 Aug 1996 11:40:00 -0400
Hello All,
I read your letters on the Web, and decided to do a group post so I don't
have to keep typing my story again and again.
My name is Joan, my husband Kerry has Transverse Myelitis. He was dx'd
Christmas Day last year. He was in the hospital for a week, on IV steroids
for a total of three weeks. He was numb from the mid chest down to his feet.
he was ambulatory the whole time, his gait was impaired, but still able to
get around. He lost 25 pounds in a week, despite the steroids. He was off
of work for a month, lukily, he is working his normal job, full time. He is
very tired each day, but that is just a small price to pay with what I have
read about others afflicted with this horrible disease. His also apparently
started a "flu", however, as Iam sure all of you have been told, we will
never really know for sure! He was diagnosed with Carpal Tunnel Syndrome
through all of this mess. His arm kept getting tingly and numb. One neuro
thought that it could have been the first sign of MS. After the EMG test, it
was decided that it is in fact CTS, and only possibly related to TM/MS.
Another big question mark as far as this disease is concerned.
I am wondering how all of you are doing with this, and how you are coping.
We would love to e-mail back and forth, as we have been doing this with
several people we met on-line. It really helps to vent your frustrations
with people who can truly understand. We "talk" to a woman in Oregon, one in
Canada and a man in Australia. It never ceases to amaze me what this on-line
stuff can do!!!
On a personal note, we have been married 7 years, two children. Amanda is
going to be five in October, and Timmy jsut turned three in July. We live in
Chicago, and Kerry works for the Airlines, at O'Hare Airport.
kerry is scheduled for a sleep apnea test this month, and another MRI in
September, to see what his lesion is doing. Thus far, it has not shrunk
which baffles the doctors that he has regaind most of his feeling.
We look forward to hearing from you. It really helps to get a network going.
Incidentally, I am working with a woman in Washington who does not have a PC
at home, therefore cannot go on-line. She is starting a newsletter about Tm.
her 18 month old daughter was dx'd a few years ago. I would be happy to
share her name and info. if anyone is interested. The better informed we
are, the faster we can lick this!
Our prayers are with all of you!
Joan and Kerry