I was really happy to hear that you are walking some without your walker - that
is always encouraging. I let go of my cane some at home and
kind of walk with the walls - sometimes without the walls. It takes so much
time to improve - if nothing else hits you. Do you take
neurontin for nerve pain? It has helped me.
Janice
From: Roger Pratt
Sent: Saturday, July 03, 2010 5:37 PM
To: L T CHERPESKI ; tmic
Subject: Re: [TMIC] 2010 - Here we go again!
My thanks to Linda and all of the many others who have replied to my original
message. You guys really are my lifeline. I don't post very often, but I
always read, laugh, and many times cry with you. You are all in my prayers.
I am making very slow progress. The swelling is going down in my feet and of
course pain is going up since nerves seem to be waking up and reconnecting. I
take this as a good sign. I am also able to walk a little without my walker.
Just got to be patient and keep on keeping on.
All my best to all of you,
Roger in Kennewick, WA
----- Original Message -----
From: L T CHERPESKI
To: tmic ; Roger Pratt
Sent: Thursday, July 01, 2010 3:07 PM
Subject: Re: [TMIC] 2010 - Here we go again!
Hi Roger - I am really sorry to hear about the Mononeuritis Multiplex, just
one more curve ball you certainly could have done without. I did take some
time to read up on this, and actually I have heard of it. Just a note that
will maybe relieve a little anxiety. I have been on Imuran for over 6 years
now and have done just fine. No side effects, no problems. It seems to be one
of the lesser evils as far as immunosuppressants go. I will most likely be on
Imuran the rest of my life too, unless something more exciting comes along.
Your doctor seems to be doing all the right things - your immune system does
need to be suppressed to hopefully stop the progression. I'm with the rest of
the TM family - nothing but lots of positive thoughts for a good recovery. We
want to know how you're doing so please keep us in the loop.
Linda
----- Original Message -----
From: Roger Pratt
To: tmic
Sent: Tuesday, June 29, 2010 6:15 PM
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.
