Amy, that's quite amazing, your TM originating in the hospital while having an MRI. Of course, I can't see how that was related, but it is quite extraordinary, nevertheless. So sorry it was not diagnosed quickly enough to get you on steroids to maybe have lessened the damage. I was not diagnosed either until the damage was done (so no steroids either) but not as extensive as yours, thus I am not disabled but symptoms such as fatigue, etc.
I appreciate your positive attitude despite the damage TM did to your body. What does "neurogenic bladder and bowels" mean, non-functional? I have not heard of a someone with TM having a bladder removed. Thanks for sharing. I hope you can be helped with the TM email. Gary in Niles, MI ----- Original Message ----- From: amy shultz To: TM group Sent: Thursday, May 23, 2013 8:40 PM Subject: RE: [TMIC] Re: Transverse Myelitis My TM story began in March of 96. I was 19 yrs old and had graduated from High School and had a soccer scholarship to Notre Dame. While having an MRI on my jaw for TMJ the doctors said I had an "unrelated" seizure. After waking up in the hospital my arms were really heavy and had horrible pain around my mid section, and couldnt move my legs. By the next morning I couldnt move my arms or legs, couldnt talk. Couldnt breathe. I endured test after test after test. They kept thinking MS as my mom has MS but they couldnt confirm it.I was in a rehab hospital and a nursing home for a total of 14 weeks. After many weeks I was finally diagnosed after a second MRI showed lesions on my spinal cord at C 4-5. Due to it being so long since I had had the initial attack and doctors not familiar with TM, I was not treated with any steroids or any other treatment. After intense therapy and many prayers after about 8 months I got use of my arms. Not 100% but some. My arms came back very slowly. I was in therapy for months and months. I have yet to show any improvement with my legs and am ventilator dependent. I had a neurogenic bladder and bowels. I had my bladder removed in 03. I havent show much improvement after the one year mark. I hold on to hope that one day there will be treatment for us, or others like us. I deal with horrible pain and spasms daily. Something I wouldnt wish on anyone. I have been unable to return to school. It seems I am in and out of the hospital so much it makes doing anything nearly impossible. Last year alone I was inpatient 13 times. Not counting ER visits. I am on over 30 medications a day. I get exhausted very easily and nap alot. But I still enjoy having fun and hanging with family and friends and this TM will NEVER stop me from being me. Amy Shultz Columbus Ohio ------------------------------------------------------------------------------ From: heyjude48...@aol.com Date: Fri, 26 Apr 2013 23:09:12 -0400 To: tmic-list@eskimo.com Subject: [TMIC] Re: Transverse Myelitis Hi Everyone! It's Jude Hoops. I was just reading the quad list and they are talking about their injuries at what level they are injured, how it happened and when it happened. Do you think that that would be something we could do too? I think it might be interesting to know how we were all injured or got sick and how long ago it was. We've all been on this list for a long time now and I was wondering whether any of us had gotten any better over the years. Let me know what you think. Just write a small paragraph about how you came to have TM, what level your injury is at and if you have seen any improvement over the years. I love you all so much and have been thinking of you. Hugs, Jude (TIAD)
