Re: [TMIC] 2010 - Here we go again!
Grace, I have not heard you talk about how you are feeling with the NMO for quite a while.How are you doing? Have you been given anything new that has helped you? Janice From: Grace M. Sent: Tuesday, June 29, 2010 7:49 PM To: Roger Pratt Cc: tmic-list@eskimo.com Subject: Re: [TMIC] 2010 - Here we go again! Hi Roger, I used Imuran for over two years for NMO. It's an excellent immunosuppressant. What is your target dose? Mine was to be 200 mgs but unfortunately, whenever I would try to titer up to 200 mgs from 100 mgs, I developed projectile vomiting. Grace
Re: [TMIC] 2010 - Here we go again!
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.
Re: [TMIC] 2010 - Here we go again!
> > Hi Roger, > I used Imuran for over two years for NMO. It's an excellent immunosuppressant. What is your target dose? Mine was to be 200 mgs but unfortunately, whenever I would try to titer up to 200 mgs from 100 mgs, I developed projectile vomiting. Grace
RE: [TMIC] 2010 - Here we go again!
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. _ Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. https://signup.live.com/signup.aspx?id=60969
[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.
