Does anyone have this? (I suspect there are earlier postings, but the search function doesn't work well and I'm giving up on it.) Mine, probably axonal, started as expected in feet, then hands/arms, then moving up legs. Pain and other sensations in those areas aren't good, but the numb tingly feeling in my face and scalp is even weirder.

I have had body-wide idiopathic sensory neuropathy since 2009. I agree that the facial/scalp tingling is very weird. It seemed to bother me more than of the other affected areas. Now that it's progressed to more numbness and less tingling it doesn't bother me quite so much.

Thanks, LizzieBeth. I was beginning to wonder if this had happened to anybody else. Nice to know the tingling diminished and it's a bit easier to take! BTW, sometimes my head/face symptoms are accompanied by painful pressure or headaches, and my neurologist says they're migraines, which I don't think I ever had before.

I like your signature line. Good advice.

Though, mine is tingling and burning. My whole face is involved, even nose and eyes and mouth. I get a sense of pressure too in very specific spots. I hate it when my kids say it "sucks"... but, this really does. Knowing that someone else has it has helped me not completely panic that something life threatening isn't happening!

Hi,
I am sorry you have facial pain. That burning can be relentless. I felt just like you, could not understand the burning in face and scalp.
I have diffused burning and numbness all over, up on scalp and face, even inside nose and ears. Even my gums are numb. I have small fiber neuropathy, but symptoms are starting to get better now with adjustment of medications such as Methotrexate (for underlying vasculitis) and for pain control a combination of Lyrica and Amithriptylline. Actually, Ltrica is being slowly tapered until we can find a combination of as little as possible Lyrica. I actually think my vasculitis is better.

Yes, this has happened a few times since developing PN. I definitely thought I was dying. Even my tongue was tingling. I agree that it was more bothersome than tingling elsewhere.