Looking for info or someone with transverse myelitis

Posted by reb2011 @reb2011, Feb 22, 2012

March 2011 my husband woke up on a week end suddenly not being able to move his legs, lost the ability to walk, dont have control of his bladder and bowel movement problem. He was rushed to er and after extensive tests the diagnosis was transverse myelitis. Up until that day, he was a perfectly healthy person because he did not have any other underlying medical condition and all tests came back negative, it was categorized as idiopathic. He stayed at the hospital for 12 days, was given steroid, pain meds and everything else to keep him stable. He was later discharge to a rehab where he spend a month of daily theraphy and meds. By the time he went home, he was still under the care of in home therapist with continous meds to take everyday. As we are getting close to a year anniversary, although, there’s a slight improvement, he still is in wheel chair and not able to walk. Today, we just came back from his doctor’s appt which it gets more frustrating when it seems like there is nothing else that doctors can do..while I understand that this seems like a puzzle but I also wonder why we can’t seem to get precise information as to how this condition is treated..Is TM really that uncommon?..I would appreciate it very much to hear from anyone who suffers or care for someone with TM…thank you….

my husband and i was camping with grandkids on spring break on the 23rd of march of this year i was standing in the camper when all of a sudden pain hit me in my lower back and it was so horrible i lost the use of both legs. and they had to call an amblance tocome and get me. i stayed in the hospital in for 5 days them giving me steroids thru iv. the pain was still very bad. i had 5 doctors and a person that came in and did nerve tests on my left leg come in and not one could tell me what it was. i left there and went to another hospital and they sent me to another dr. he said it was transverse myelitis. by that time i had use of my right leg and was walking with a walker. the pain was still very bad. he said i had a mile case of it. thank the good lord . i am undergoing therphy and do a lot of exercise thru them as of today thank the lord, i am walking by myself, and i can do some chores around the house. i am so sorry to hear that your husband is so bad. but dont give up god is our healer and he can restore his health. i dont know how rare this stuff is but i know its painful.

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TM is indeed rare and there isn’t much that can be done once the initial attack is over. My attack was also idiopathic. I was paraplegic, and after being treated with plasmapheresis, I began to improve rapidly. I walk now. I have weakness, fatigue, pain and balance issues. I also have bowel, bladder and sexual dysfunction. It seems like the hope of curing TM could lie in stem cell therapy. Hopefully the day comes soon where we can have our myelin regenerated. I would suggest getting an appointment at Mayo, UT Southwestern, John’s Hopkins or the TM Clinic in Birmingham. Did your husband get treated with plasmapheresis?

Liked by julius

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I had transverse myelitis and was diagnosed with Neuromyelitus optica in November. I would also like some tips on diet, as I keep having flare ups, and am not sure how to deal with them.

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Ann, my husband has NMO (Devic's Disease) he does plasmaphersis every 6 weeks and Rituxin twice a yr. His daily meds are steroids, carbamazepine, protonix to protect his stomach lining from steroids. He was diagnosed March 2016, NEVER sick a day of his life, it came out of nowhere. It started as hiccups 24/7 for 3 days straight, they did an MRI found what they thought was a tumor at the base of his neck, it turned out to be a lesion which affected his hands, he has limited use and they are always so painful he says. In Dec 2017 he could not walk, MRI showed another lesion at the base of his lower spine. He is totally disabled. I really believe if we had started his plasmaphersis right away he would not have gotten the second lesion, just my opinion. I talked to ppl in Tulsa, Houston, Oklahoma City and the lesions can not be removed with lasers like cancer tumors can. The one dr said it would be worse. I think it would spread quicker thru his spinal cord. There is someone in this group that posted a website for a therapy that is suppose to help with NMO, if I find it I'll share. Good luck to you. Marie

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@julius

Ann, my husband has NMO (Devic's Disease) he does plasmaphersis every 6 weeks and Rituxin twice a yr. His daily meds are steroids, carbamazepine, protonix to protect his stomach lining from steroids. He was diagnosed March 2016, NEVER sick a day of his life, it came out of nowhere. It started as hiccups 24/7 for 3 days straight, they did an MRI found what they thought was a tumor at the base of his neck, it turned out to be a lesion which affected his hands, he has limited use and they are always so painful he says. In Dec 2017 he could not walk, MRI showed another lesion at the base of his lower spine. He is totally disabled. I really believe if we had started his plasmaphersis right away he would not have gotten the second lesion, just my opinion. I talked to ppl in Tulsa, Houston, Oklahoma City and the lesions can not be removed with lasers like cancer tumors can. The one dr said it would be worse. I think it would spread quicker thru his spinal cord. There is someone in this group that posted a website for a therapy that is suppose to help with NMO, if I find it I'll share. Good luck to you. Marie

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Hi @ann123, I believe these were the links about therapy for NMO that @julius was referring to.

* Science Daily News article — Mayo Clinic researchers stop neuromyelitis optica attacks with new therapy https://www.sciencedaily.com/releases/2012/10/121009092414.htm
* NMO Care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/neuromyelitis-optica/care-at-mayo-clinic/mac-20375661

You may also be interested in this discussions on Connect:
– Looking for info about Devic's Disease / Neuromyelitis Optica (NMO) https://connect.mayoclinic.org/discussion/hi-i-came-here-looking-for-the-same-kind-of-info-about/

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Hello all,
I joined this group in hopes of finding answers to possibly the same condition. The past three years have been extremely difficult for me trying to get help and diagnosed. I have a thoracic lesion but it was never determined of what kind. I’ve had numerous mri,labs,and lumbar puncture but still no diagnosis. On my last mri report which was done at New Years it said on the report myelitis. I also have syringomyelia/ cysts in the spinal cord in the thoracic and cervical regions. I had to switch insurance due to a job change and I’m really struggling to find help now considering I have to walk in a drs office and start all over. I’m just curious as to why if it was thought to be demyelinating, why is it three years later and I’ve yet to be given any type of treatment. My last scans showed the lesion had grown as well as the central cord expanding. At this point does anyone know if I should attempt to go straight to the er. I feel time is essential with this and health declining I need help now. Any help or suggestions would so greatly appreciated.

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