Hi Lee--RE congruence (and sympathy) with your points: (a) some soreness and redness in eyes, which I tend to ignore (b) all other eye symptoms: yes (c) facial pain is similar, but starts at mouth and moves out along jaw to just below the ear. By end of day intensity is hard to deal with. (d) headaches but not daily, (e) neck/shoulder pain, yes, but have controllable head tilt toward right shoulder, (f)lip movement and some chin thrusting but not tongue rolling or protruding. A lot of clenching of teeth though with grimacing as facial expression of this.
It does sound like you have a facial dystonia. do you get botox shots in the muscles that are apparently involved with all of the facial pain and spasms? I think these muscles vary from person to person. Shots around eyes don't do much for lower facial symptoms! When I started developing the lower facial symptoms (and associated pain), I started seeing a neurologist who diagnosed Meige Syndrome. Guess it's part of the general progression of dystonia that some of us experience. Try to keep notes on where these pains/spasms originate and terminate. it will help your new doc a lot. If you find treatment specifics that alleviate these symptoms, please share!
My neck pain and head tremor (which you didn't mention) have been controlled reasonably well with clonazepam. Do you take any of the benzodiazepam meds? Have you tried deep massage of lower face/neck/shoulder muscles to help with pain? I've found the massage to be helpful to lessen pain, but not a cure.
Joellen
