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.
[TMIC] RE: tmic-digest Digest V2010 #276
Please unsubscribe me Thanx steve _ From: tmic-digest-requ...@eskimo.com [mailto:tmic-digest-requ...@eskimo.com] Sent: 30 June 2010 15:36 To: tmic-dig...@eskimo.com Subject: tmic-digest Digest V2010 #276
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 Rare Neuroimmunologic Disorders Symposium
The 2010 Rare Neuroimmunologic Disorders Symposium Friday, September 24 Sunday, September 26, 2010 Hosted by the University of Texas Southwestern The 2010 Rare Neuroimmunologic Disorders Symposium is being hosted in Dallas, Texas for the first time. Over the last 10 years, symposia have been held in Baltimore, Albuquerque, Los Angeles and Seattle, bringing together patients, families, clinicians and scientists with interests in rare immune mediated disorders that affect the nervous system. The 2010 symposium will include two concurrent sessions, with the ability of participants to move between them as desired. The clinical session will feature talks geared towards patients, families and practitioners who are seeking out a greater understanding of disease biology, current treatment options and a preview of cutting edge research. The basic science session will feature talks and discussions that will explore complex topics in novel ways with a goal of stimulating cross fertilization of ideas between different scientists. The symposium will start Friday, September 24th in the morning and will be hosted at the Galleria Westin Hotel in Dallas, Texas. The last session is scheduled for midday on Sunday September 26th with the program closing at 12:30. There is a dinner planned for Saturday, September 25th with a keynote speech delivered by Dr. Lawrence Steinman from Stanford University. The clinical sessions will include talks on various neuroimmunologic disorders, including transverse myelitis, neuromyelitis optica, acute disseminated encephalomyelitis and pediatric multiple sclerosis. There will be presentations on disease management, symptom management, rehabilitation and research programs. There will be opportunities to question presenters, work in small groups, take part in moderated discussions, and connect with patients, families, clinicians and research scientists. You will need to make a reservation with the hotel and also register for the symposium and pay a registration fee. The Westin Galleria Dallas 13340 Dallas Parkway Dallas, TX 75240 Phone: (972) 934-9494 The hotel rate is $159 per night. You must identify yourself as a participant in the Rare Neuroimmunologic Disorders Symposium to receive the group rate. The room block is available for the dates, September 20-28, 2010; you are eligible for this rate between those dates. The group rate is only available until August 30, 2010 and there are a limited number of rooms, so the rate is subject to availability. In other words, if you are planning to attend the symposium, please make your hotel reservation as soon as possible. Online hotel reservations can be made at http://tinyurl.com/rnds2010hotel To make the reservations by phone, please call (972) 934-9494 The symposium registrations are being administered through the University of Texas Southwestern Office of Continuing Medical Education. The registration fees are as follows: Physicians$425.00 Resident/Fellows/Allied Prof$300.00 Patients/Families f $225.00 Graduate Students $150.00 Registration can be completed by visiting: http://www.utsouthwestern.edu/RNID2010 (estimate to be available July 6th) You can fly into either Dallas Love Field or DFW (Dallas-Fort Worth). There isnt a free shuttle service between the airport and hotel. You will either need to take a taxi or you can make a reservation with the Super Shuttle Service by calling: (800)258-3826 or online at: http://www.supershuttle.com/. Once you get to the Westin Galleria Dallas, you should have little reason for ground transportation. There are many restaurants near the hotel and most of your meals will be provided at the symposium in the hotel. The symposium program agenda will be posted on the registration web site. We are in the process of finalizing the program and presenters. If you have never been to a symposium, we strongly encourage you to attend. We are certain that you will leave Dallas as a more effective advocate for your medical care. In addition to the great educational opportunity, you will meet many other people who understand your experience in a way that no one else does. People who meet at our symposia have developed lifelong friendships. If you have been to our symposia in the past, then you understand why you need to try to make it back.
[TMIC] July Birthdays
Happy Birthday to the middle of summer kids! Please send any additions or corrections to tmic-l...@eskimo.com. I'm not sure about a few of these addresses. 7-5 Sumer (fjs181...@aol.com) 7/5. Rick in tn (ashfo...@att.net) 7- 9 Vicki Frohna (to...@bright.net ) 7-14 Julie (chi...@cox.net) 7-15 Sandi S. (ssie...@myelitis.org)(Fearless leader of the TMA!) 7-24 Kevin Weilacher (hwyfli...@yahoo.com) 7-25 Peggy Wilson (pwi1991...@aol.com) 7-25 (jennapa...@aol.com) 7-25 Michelle Balliet (chelley...@aol.com) 7-27 Linda (lp...@aol.com) 7/29 Hildred (missprissgran...@aol.com) 7/30 Dex Packard (d...@centurytel.net)
[TMIC] Unidentified subject!
www.afg8.uspillsstore-c.com
