My brother was diagnosed with acute transverse myelitis 7 months ago. He first had symptoms similar to cardiac symptoms (feeling of band across chest, palpitations). Then he lost function in his legs and was admitted to the hospital. He was investigated in hospital for 2 weeks (MRI's, lumbar puncture, blood work). Tests were negative except that there was a small Chiari malformation in cervical area that they said was insignificant. He had spinal X-Rays which showed sports injuries related to many years`playing hockey but these injuries were not thought to be related to his symptoms. By exclusion, he was diagnosed with transverse myelitis. He regained function in his legs but was left with heaviness in his right arm and leg, headaches, neck pain and numbness in his lower face. He returned to work but recently the symptoms have become worse. He experienced the palpitations and now both legs are affected. He has eye soreness, headaches, a prominent limp and the numbness in his face has increased. They now think that it may not be transverse myelitis. He had another MRI this week and will be seeing the specialist again. He is getting very frustrated as his symptoms are just getting worse and they do not seem to be able to find the cause. Would appreciate any suggestions re- what questions to ask and what kind of tests and specialists would be appropriate.
The Transverse Myelitis Association online may be able to help you or your brother with some questions. The organization helped me understand what most doctors have never heard of. I too had acute TM and it's taken many years to recover from the paralysis. Most people never regain function so I feel very blessed. Find a good neurologist that has knowledge of TM. It's rare to find a neurologist that has experience with TM, however don't discount a neurologist that has a least heard of the disease. It may very well be something else entirely, but that can unfortunately be part of the neurological process, the process of elimination. Good luck and I hope that this helps.
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