Re: [TMIC] 2010 - Here we go again!
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.
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.
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 Prattmailto:r.c.pr...@verizon.net To: tmicmailto:tmic-list@eskimo.com 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.
Re: [TMIC] 2010 - Here we go again!
Roger, Sorry to hear that things have gone south..but thank goodness your doctor worked to find what was going on with you, and shared your problems with other docs till they found what was happening! I've tried taking Imuran two different times and my system can't tolerate it! (Like Grace, I cough that pill up almost immediately)...wish I could take it!! I hope that you're beginning to regain some functions...keep us up to date with what's going on with you! WE CARE!!! janh Stillwater, OK From: j ra rumc...@hotmail.com To: r.c.pr...@verizon.net; Transverse Myelytis tmic-list@eskimo.com Sent: Tue, June 29, 2010 7:33:08 PM Subject: 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. Sign up now.
Re: [TMIC] 2010 - Here we go again!
I am so sorry for this new development, Roger. I hope and pray the medicines give you the best recovery possible. Barbara H. http://barbarah.wordpress.com On Tue, Jun 29, 2010 at 8:15 PM, Roger Pratt r.c.pr...@verizon.net wrote: 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.
[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!
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
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!
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
