the 'omissions'. From all that I've read, it appears that while Neuropathies are an issue growing by leaps and bounds, it's generally listed as a CONDITION, not an ILLNESS or DISEASE per se. I suspect it's because it occurs as the result of some other disease, such as hereditary,cancer, AIDS, Diabetes, poisons, or whatever. The IDEOPATHIC add-on compounds insult to the nerve injuries [pun accidental] as it's not determined what disease is the actual cause. But then, rarely are hereditary factors tested, nor is testing ever truly comprehensive to more thoroughly assess causes, if any.

Glenn: I'd love to see the Cornell protocols, and, I agree LizaJane's sheets are much more comprehensive than Mass Gen's. While this might be a 'patient' info sheet, there is a lot missing for sure.

It all is a sort of reflected by the treatments and medications used for treatments. Nearly all of them are off-label, and those few that are on-label are approved based on the smallest trials possible. It is even Further reflected in the lack of coordination regarding research, as there is none. While research on the specially bred mouse and rat level is interesting, same with that of such work with snails and other creatures, very little is being done in terms of actual therapies for us who happen to be human. I doubt we will see much improvement in my lifetime! A look at NIH Clinical trials is a wake up call to those with neuropathies....as they are primarily regarding specific, diagnosed primary diseases that 'happen' to have PN as a side effect.

Billye, you are almost forunate in a way, that there is a definitive Sjogren's diagnosis. There are a good variety of actually APPROVED therapies and meds for your defined disease. Your diagnostic protocols are far better defined than 97% of us really. That is, IF you can get a doc to go 'down the list'!

Jane, even I, with a CIDP diagnosis [simply meaning that it's auto-immune and still agressive] am in the 'ideopathic' group. In my case, I can define THREE possibly FOUR specific 'causes', yet not one doc expresses interest in persuing those as potential reasons. I simply accept it, ask occasionally and truly hope that I mite get a doc's curiosity 'button' at just the rite time.

Here's another site addressing the 'laboratory' perspective, again the whole details are vague in many quarters:
http://neuropathology.neoucom.edu/ch...europathy.html

Better days for all - j