which chemotherapy drugs did you use, chemo of certain kinds have already been shown to cause PN, i dont know how he can definitely say you dont have pn, when your the only one experiencing it.

To David: thank you for your corrections and further information about Quercetin etc. I had read about amyloidosis and read more today with your post. It is also a very serious disorder: one that I hope is ruled out for you....

I especially appreciate the information about the lumbar puncture for MCAS testing, for I was unaware of this. You've done such great research! I'm hopeful others reading this site will benefit from your work as much as I have. I recently read a blog written by a woman who went to the Cleveland Clinic for sensory and autonomic neuropathy. Her visit began with immediate biopsies for amyloidosis and Sjogren's. This was a while ago, but I hope they have continued this practice.

To Antonina: What a drag to be dismissed out of hand! It reminds me of the neuros I've called who said they just won't touch dysautonomia. ...even though PN is listed among their "disorders treated;" so frustrating. Have you since found someone better? I think the doc at Mt. Sinai I met with took me seriously...she did order more AI testing. ..yet we did not talk at all. Not what I wish for, but we'll see whether she opens up and is more receptive to me when I see her in two weeks.

The saga continues...

Anyway...as I've mentioned...I'm glad for all the advice, stories, and support I receive on this
site!

i had 5 each of taxol & carboplatin. this alleged PN guru knew my entire history. idk if he is still @ mt. sinai. i hope he's retired.

needless to say i was stunned to hear him make such a counterintuitive pronouncement. i did get lucky 4 years ago when i traveled to johns hopkins & saw the head of PN there. of course the long distance from nyc makes an ongoing relationship with him problematic, if not impossible.