[pamzilla]

Dani started with ear pain and over a year has gone into stabbing ear pain, both sides of her jaw hurt all the time and extremely bad headaches. She has gone to an ENT, Oral surgeon, 3 primary Doctors, pain clinic Doctor and a Neurologist who put her on tegretol looked at the MRI and MRA and said they are Ok and her facial pain is on both sides of her face so it is not trigeminal neurolgia and said they can not help her. She has been in the Hospital 3 times in 1 month and one time her face was asymmetrical from the pain. I am not sure what she has. Her only diagnosis has been atypical facial neurolgia. She has been on many medications and she always has the worse side effects there is. We will probably go to Mayo Clinic in the near future. She has not seen a Rheumatologist and am not sure how to guide her. All the primary physicians do not guide her to anyone just give her pills, a Psychology consult, or states we can not help her anymore for this problem.
Any ideas would be greatly appreciated. I will tell her about this site.

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. ***

[Darlene]

Pam,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

As you can already see there a great number of forms to check into. There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene