welcome arachne - glad to have someone else to add to our collective knowledge (not glad that you have been affected on and off for 12 years though!). The first dr i saw about the condition, when i was feeling quite frightened about the pain, acted like i was over dramatising a sore throat. I couldnt get him to understand.

I saw a different dr at the same community clinic who luckily had come across the condition before and nailed it! so it was a relatively short time until i had a proper diagnosis. I tried tegretol but couldnt cope with the dizziness thatt happended from time to time. Neurontin is great in that it has very few side effects but only dulls the pain.

I am a 48 year old woman (more the typical age for it to hit than you semcsquared!) and work as a policy officer for the goverment. I am not very domesticly inclined so my new years resolution is to bake something! I do a lot of reading and like socialising with friends so it is very frustrating when my ability to speak is affected!! looking forward to continued information sharing with you all!