Boy, you have really been through a lot! Since this is also an
autoimmune disease, I assume you got it because of the TM or because of the
reason you
were hit with TM in the first place. Let us know how you are doing on the
new meds. So sorry this happened, but, again, keep posting to us and let us
know how you are doing/feeling.
Janice
From: Roger Pratt
Sent: Tuesday, June 29, 2010 7:15 PM
To: tmic
Subject: [TMIC] 2010 - Here we go again!
Here it is almost the 4th of July, 2010, I haven't written in a long time, and
here I am again at a major turning point in my life.
It all started in mid-February. While on vacation in Mexico, my
right foot started hurting. "More fun and after-effects from my Transverse
Myelitis," I thought, and I resolved to see my neurologist when we got home. I
had recently stopped a medication she had put me on for nerve pain that had
horrible side effects and also had what seemed to be a spider bite on my right
leg. "Something minor," I thought. By the time I got to the doctor, my right
foot started to swell. She had an ultrasound done of the blood vessels in my
legs to check for blood clots, and then my left foot and ankle started to
swell. Then my right hand went numb and I lost use of two of my fingers. As
pain and swelling increased, I went through five MRIs of my spine and brain, a
spinal tap, other miscellaneous tests, and handfuls of pills (mainly pain pills
that just made me sicker). After much delay, my doctor sent me to an MS
specialist in Seattle, who confirmed that my doctor was, as she had said before
sending me, "clueless", and that she (the doctor in Seattle) didn't know what
it was either. By this time I started having muscle loss in my right hand and
was generally losing weight all over. Finally on the 7th of June I was sent to
a doctor in Walla Walla who specializes in peripheral nerve disorders. He did
a nerve conductivity test and diagnosed me as having a rare autoimmune disorder
called Mononeuritis Multiplex that attacks peripheral blood vessels and nerves.
I am now on steroid IVs once a week and am taking a drug called Imuran which
suppresses the autoimmune system that should stop the progression of the
disorder. This will probably take a long time and may not reverse all the
damage. I may have to be on Imuran for the rest of my life. For now it's just
wait and see.
