Hey Roger,
Hang in there buddy! Just when we think things can't get worse for us TMers, TM
throws us a curve ball. I took the opportunity to read up on this disorder and
I am in shock that there are so much things that are always going to be heading
our way because of TM.
My thoughts and my prayers are with you friend...always
Regards,
Jeron
From: r.c.pr...@verizon.net
To: tmic-list@eskimo.com
Date: Tue, 29 Jun 2010 17:15:28 -0700
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.
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