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<mailto:[email protected]> To: tmic<mailto:[email protected]> 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.
