Your frustration has got to be huge. This is a good place for information, but also a wonderful place for finding support & help through the dark hours when you think there just isn't an answer to be had for anything.

There are a few different Forums you may want to post in, or start a thread there & repost this--or maybe one of the administrators will come along & move it for you. Read the posts also in case something there triggers a connection for you. Folks there may suggest other directions for you to make queries, but I think this is a place to start.

The Occipital Neuralgia and other Cranial Neuralgias Forum seems the most obvious place to begin. There you'll find discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. Here's the link: http://neurotalk.psychcentral.com/forum105.html

Since the jaw is involved, how about posting on the Dental Forum? http://neurotalk.psychcentral.com/forum89.html

I know they said it wasn't trigerminal neuralgia, but just in case a second opinion is in the offing, here's the link to the Trigeminal Neuralgia Forum: http://neurotalk.psychcentral.com/forum26.html

Arthritis is a strange condition, poping up as odd symptoms not easily recognized as arthritis, and in the jaw it can become a truly baffling problem to diagnose. Here's the link (both Osteo and Rheumatoid arthritis): http://neurotalk.psychcentral.com/forum86.html

Come on back, Pam, & see what experience & advice the members can share. Ask questions, get some virtual hugs, rant when you need to& we'll listen--even cheer you on if you want! We're here for whatever we can do to support you & Dani in this difficult up-hill trek.

Take care. ***