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Neuropathy: My Journey

Neuropathy | Last Active: Apr 8 5:04pm | Replies (62)

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@artemis1886

I finally saw Dr Oaklander. I was kinda disappointed. I learned my tremors are caused from my neuropathy. I learned that if I would have remained on IVIG therapy after age 18 I would not be in the shape I am in now. I was on IVg therapy from age 10-18. I am 61.. she says she would start me on IVIg if I lived in Boston but I live in Texas. She told me she would talk to a neurologist in Houston to see if they can find someone in Dallas to treat me. These are the doctors I should be seeing immunologist, rheumatologist, neuromuscular neurologist and a neuro physical therapist. A lot of doctors. Other than that nothing else happened. Mine has progressed pretty bad in the last year with my balance and tremors. It’s like impossible to be treated for this. My neurologist just swept me under the table telling me to come back once a year.

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For those that wanted my prescription cream I finally picked it up from the pharmacy.

My diagnosis was severe axonal sensorimotor polyneuropathy and small fiber neuropathy autoimmune but no one can figure out the autoimmune part test negative for everything but elevated sed rate and plus one other thing. It’s moved beyond severe according to Dr Anne Oaklander. My reflexes were not working and she stuck a needle in me legs and hands to see how much feeling I have left. None below me knees and hands. I have to say it was weird watching a needle being stuck into you and not feeling it.

It does not have a name. It is a compound pain cream that my neurologist gave me. I am allergic to gabapentin by mouth but I can take it in cream. I have stomach ulcers for over 10 years so I can’t take anti inflammatory pills.