A little background is in order. In late ’98, started to have stiffness & pain in my legs. Then couldn’t walk, climb stairs, etc. Go on bed rest because doc says I have Epstein-Barr. Don’t improve so I see a rheumo. Dx’d with Polymyalgia Rheumatica. Take prednisone & that helps with the stiffness but still cannot walk.

By Jan. ’99, dx with ovarian cancer. Have surgery & lots of toxic chemo. Walking gets so bad I need a wheelchair. I get a bit better and need only a walker which I still use 8 years later. Current situation: Legs, feet & hips extremely painful, weak & heavy. Numbness in feet, calves, hands. Balance totally goofy & fall over at the drop of a feather. Have tried: B12 sublingual & injections, neurontin, elavil, prednisone, Tylenol, onycontin, and many more too numerous to remember. Physical therapy has helped to a small degree. Currently only taking synthroid for hypothyroidism. No other drugs for whatever is the matter with me.

Fanfaire,
After the Mayo rejection, I asked my rheumatologist (who heads the dept. at the Hospital for Special Surgery) to intervene on my behalf and he insisted that I can get the same workup here in NYC. He is very kind and well-meaning, but he is mistaken. There is no such Mayo-like workup available in NY. If there were, I would have found it. The neuro I see has no particular “clout” and the doc who initially sent my records to Mayo was my oncologist who apparently also has no clout.

Right now it seems that my one other option is to go back to the rheumo to try to change his mind. I think getting a letter of “medical necessity” is a brilliant idea. It certainly can’t hurt.