I was only scheduled to see the neuro when I went to Mayo but in her examination she determined that I needed to see others. And I asked to see the dermatologist due to the fingernail problem I have. So yes to your question. All in all when I went to Mayo I saw two neuro's, gastrointerologist, opthalmologist, rheumatologist, dietitian, doctor of physical medicine. I think that is all but not sure.

Billye

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.

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

I'm sure I've had dozens of autoimmune panels performed. Back in 2003, one came back w/ a slightly elevated ANA. But the neuro who was treating me then said it was "nothing."

The latest rheumo workup (2007) did show a mild case of polymyalgia rheumatica and when I took prednisone I felt great for the first 2 or 3 days and then the other sx (numb feet, bad balance, burning, heavy legs, etc.)came back w/ a vengeance. So I got off it asap. You can imagine my euphoria when I felt so "normal" for about 3 days.

A couple of years ago I saw the top paraneoplastic neuro in NYC who dx'd me w/ fibromyalgia and suggested a very low dose of elavil. It too did nothing for me.

This all goes to the quest for a conclusive dx which I may or may not get @ Mayo and I intend to follow up on your suggestion. The worst that can happen is that they say "no" yet again.