NeuroTalk Support Groups

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- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Misdiagnosed (https://www.neurotalk.org/peripheral-neuropathy/112157-misdiagnosed.html)

Because I began to experience some new and disturbing symptoms, I saw a neurologist at the MS clinic a while back. Friday I had my MRI (head and neck) and today was my follow-up. The good news (if there is any) is that the MRI revealed I do have a brain (the doctor has such a wonderful sense of humor, doesn't he?) and that it looked pretty clear of any signs indicating MS. He said the c-spine looked excellent. He also said, however, that what I have been experiencing for years is NOT peripheral neuropathy . . . that I have been misdiagnosed. For now I have an operating diagnosis of either transverse myelitis, or neuromyelitis optica (NMO) or Devic's Disease.

Not MS (yet) . . . but still not good. I will be seeing a neuro-ophthalmic specialist some time during the coming month.

I will be starting on Tegretol soon.

Anyone here ever deal with this?

A friend of mine has a sister who was just diagnosed with transverse myelitis. She also has/had other health problems such as peumonia and gastric problems. She is elderly. They don't know how it all will come out for her. She is in the hospital and has been for a few weeks.

Hope things turn out for you.

Hope you continue to progress on your diagnosis and get some answers. One other proceedure that might be performed later on is a myleogram. It has a little better resolution than the MRI. It may help see anything hinden by some MRIs. I would say your MRI is as good as it can get at this point. Hope your next visit produces good results.

Just found out I have to discontinue Tegretol. Three side effects . . . two of them potentially serious. The nurse said one of the side effects should have sent me to the ER.

Now what? Seems I keep running out of options. . . .