Stac, yes, not a lot of docs know about it because I don't think it is an official diagnosis. More importantly, with PN I don't think it usually takes them in any new treatment direction.

The first doc I saw that mentioned it was Dr. James Berry at MGH. He officially diagnosed me with Idiopathic SFN, but then said "I am keeping Erthyromyalgia in the back of my mind just so you know I am thinking of other things." It was comforting at the time but not necessarily helpful.

The new doc I am seeing in Rochester NY didn't outright diagnose me with Erythromelagia but thought most physicians would probably agree I have it. He's not as as experienced as Dr. Berry, so he might be a little hasty here.

I think for Erythromelagia or PN or SFN you will find pretty much all the same tests.

I think you will find this forum chock full of folks who can't fit a name to their symptoms. I'm one of them. Like I said in the beginning having Erythromelagia as a diagnosis doesn't take them in a new direction when the other diagnosis is Idiopathic PN or SFN. The treatments are all the same. Having a name to put to it is nice, but having a solution is golden.