Just wondering????
Michele Rowe (rowe4(AT)penn.com)
Sat, 27 Mar 1999 18:36:25 -0800
Once again, I'm feeling very insecure about this transverse myelitis
illness again. There are so many unanswered questions for me. Originally
was diagnosed in July 96 and was in the hospital for 7 weeks. Made a real
good comeback from this originally and had gotten my life back to pretty
much normal until Sept. 98. I had a slight relapse and did the solumedrol
treatment and kept working. Then got really sick and had to have my
gallbladder out in November. Which put me in to a relapse in Dec. 98. My
right leg didn't want to work right and my right arm started going numb and
my writing started to go. So I did the solumedrol again and steroid taper
until Jan. 99. I wasn't working at this point. My next MRI was good and I
went back to work part time. I have been taking tegretol 200mg. twice a
day and baclofen twice a day. I have a lot of pain on my right side by my
hip. Clothing really hurts it and I can feel spasms by my waist. Now is
where it gets interesting. It's been a very stressful time for me, a
friend passed away with cancer and my father was hospitalized with
myelitis. Not transverse though and he is home and doing really well,
almost back to normal. But at this time, I got a rash on the top of my
body from probably the waist up and on the arms. It seemed to fluctuate
and didn't stay all the time. I was thinking it was fromt the tegretol but
who knows. Anyway on a Friday evening I got the rash and started taking
real bad spasms throughout my body. My local dr. wanted me to go to the ER
for some tests. Of course I did and they said everything was fine and
gave me a shot of depromedrol and bendryl and sent me home. I had an appt.
with my neurologist on that Weds. so I just waited to see him. In the
meantime, I got a really bad head cold. I had called the neuro on call and
he wanted me to start on 80 mg. of prednisone until I got to the dr. since
I was still getting the rash. So I went to the neurologist and he assures
me everything is fine. I'm strong, no weakness, motor skills are fine and
he decreases my steroids to try to get me off and also the tegretol since
he thinks that's why I hve the rash. I come back home and in two days I
feel awful. Real shakey, heart pounding, weak and just an insecure
feeling. He still feels everything is fine and takes me off the steroids
at once and he feels this is what is causing the feelings. I have a band
around my chest again, real tight, my hands hurt a lot of the time, almost
like you've been out in the cold and come back in and warm them up. I
don't seem to have much energy either. It's only been a day since I have
stopped the steroids and I guess I feel a tiny bit better today, but I
still get the rash, not as bad though. I have the tight band around my
chest and I can feel spasms some also. The pain on my right side is there
at all times and that is so frustrating, to have pain 24 hours a day, 7days
a week. I guess I'm just wondering if anyone else has ever had any of
these feelings again with out having a relapse. I'm trying to work through
this, and I trust my neurologist. He has been correct about things so far.
I just wonder if you can have all these symptoms return without actually
having a relapse. I'm going through that scarey part like I did the first
time. But I don't want to panic about everything and I just hope and pray
that I continue to get better. Also has the tegretol and steroids ever
acted like this for anyone? Sorry if I rambled, but there are so many
details as we all know. God Bless you all.
Sincerely,
M. Rowe