Antonia,
Try writing a personal medical history with a plea to be seen. Try challenging them in some way to give you an appt. Like tell them you are willing to donate tissue for research and telling them what you would like to have them tell you. Also I'd be curious to know what your B12 test results show.
It seems to me that you have an established cause of your neuropathy. Have you had a rheumatology or neurologist do an autoimmune panel for you?
Billye
Quote:
Originally Posted by antonina
I've had PN (and possibly a long list of other things) since receiving chemo back in '99. About 8 months before I was dx'ed w/ cancer, I began having leg cramps, spasms, muscle weakness, difficulty walking. I believed I was coming down w/ MS. The internist said I was too old to start having MS so he concluded, from a blood test, that I had a "reactivation" of an Epstein Barr virus. Even though I had never had Epstein Barr, he felt that was my problem.
Fast forward to 2007. Still do not have a definitive dx. I may or may not have the following: PN, CFS, Fibro, Polymyalgia Rheumatica. I had a Paraneoplastic Syndrome test in '07 which came back negative.
In 2007, at my urging, my oncologist sent my records to Mayo. Mayo turned his request down, saying they could not offer me an app't. When I phoned a Mayo intake person, she said the reason for the rejection may have to do w/ the longstanding nature of my sx.
What, if anything, do I do in order to be worked up there? Any help would be wonderful.
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