You have come to the right place
 

Hello Ann-Elizabeth. Just wanted to say welcome. You certainly have found a place that is superior in caring and sharing. :grouphug: We all have different experiences, but by sharing them, we help each other in many, many ways. Glad to have you aboard!

Your neurologist may have a good reputation, but it doesn't seem he's paying attention to the form and progression and timing of your symptoms.

They sound much more like what people suffer from when they have an inflammatory autoimmune neuropathy, or autoimmune from other causes. It doesn't sound like plain old idiopathic and definitely NOT alcoholic.

Please get your neuro to focus on this. Bring the charts and ask for all the neuronal antibody tests, PLUS, an emg and ncs. You haven't mentioned any studies.

Also, a good general workup for the rest of possible causes of pn, and nutritional eval: thiamine levels for instance, which ARE lowered in alcoholics and cause their own symptoms.

Advocate for yourself! You deserve it.

I admit, I got very lucky...
 

BUT, you can't just sit back and WAIT!

I am near a few teaching hospitals, and I just dialed from my plan's covered doc's list in the region! I got an appt in one week w/the head of one hospital's neuro dept [he was asst head at the time]. It was luck, but in the setting up of this appt the two other 'major hospitals' had appts to be had within 3 weeks of call. Hey, I took the first I could get! I struck gold and can still walk. [Umm, except when I keep breaking feet]

A couple of years later I had a referral from another neuro about continuing IVIG..to a different hospital neuro dept head..That neuro head flatly stated that 'IF I had CIDP, I'd had to be in a wheelchair!' I replied: I am NOT because I received the IVIG in time, and, asked for and received PT-- Sooo I'm NOT in the chair, thank you! You could see the gears turning and squeaking a bit in the re-thinking of things and conceded I just might be right.

Usually the chief cheeses see us when it is too late! Don't give up or give in!!! It's your life at stake and the ability to live it well.

Have faith in yourself and find a doc who has a bit of faith in YOU! Hugs-j

Just to add
 

two other ideas to the already excellent suggestions above.

1. "Jaw pain"=TMJ/TMD. Get it treated specifically. I thought it had nothing to do with my PN, which shared some sx with yours. Turns out, it had everything to do with it. I went to a clinic and got the full roster of treatment: an appliance to prevent clenching, trigger point therapy (both bodywide and intraoral), ergonomics, PT, the whole lot. All I can say is, my PN mostly went away when my TMJ went away. Having TMJ at the same time as head and face neuro symptoms is very suspicious.

2. Get your vitamins. Prolonged alcohol consumption deplete B-vitamins.

Good luck!