But if they won't take you unless your autoimmunity is already diagnosed and you have neuropathy, what would be the point- it would be figured out already? What would they offer?

They will listen to you and run a million tests, but if you don't fall within their pretty little box (criteria), then you won't get a solid Dx and they'll send you home saying you don't have AI disease and it must be in your head (seriously, some have been told this). They want criteria met...just how they operate.

If you want to see how bad it can get at Mayo... read this thread.

http://neurotalk.psychcentral.com/sh...highlight=Mayo

A long time patient with MS had the most horrible experience there not too long ago.

Sadly, she used that same phrase...little box!! And of course, it was all in her head like others I know that went there (myself included). That about sums it up!

Go to Hopkins or one of the others Glenn mentioned.

i went to hopkins in 2010
 

i saw the head of the PN center. he repeated an emg, did a skin biopsy & performed bloodwork.

i felt that i got a more thorough workup there than i had ever had with the myriad neuros i consulted in nyc, including drs. latov & chin.

after the doc reviewed the test results, he concluded that my PN, altho initially caused by chemo, was exacerbated by a variety of concurrent health issues...untreated diabetes, etc. all of this information was never evaluated nor discussed by the docs in nyc.

in short, my hopkins trip was worthwhile & i would go again if i felt the need to.