I have been reading stories on this site and there was a gentleman who gave a website that showed a therapy for this disease. If anyone sees it could you please let me know, Thank you Marie
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Sep 11, 2018 · Looking for info or someone with transverse myelitis in Brain & Nervous System
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
kanyd, my husband has Devic's Disease(NMO). He has 2 spinal lesions, one at the base of his neck, which makes it difficult and painful to use his hands. And one on his lower spinal cord, he is in a motorized wheelchair, he can't use his legs to stand on. He can only use them only to transfer on a transfer board to bed, car, shower,etc.He was diagnosed March 2016 with neck lesion diagnosed Dec. 2017 with lower back lesion. He is taking carbamazepine, prednizone, he does plasamaphersis every 6 weeks, and retuxin twice a year. But like you, his vision is not affected which makes me wonder bc his eye dr said his vision is perfect. Right now he is not getting worse but he's not getting better either. He says he feels like he might not be able to use his hands much longer. At first they thought he might have transverse myelitis. i wish you well. I'll update if he has any changes. Marie