Sheetrock0131,
I hope you are still on this site; I have read all your postings and they brought tears to my eyes... I can't believe how long you have lived with this horror. I am 71 and have just been enduring it for the last one and an half years and feel like I am losing my mind. I was especially interested to read about your experience with Boston doctors & hospitals-how disappointing; it was a place I thought for sure if I went to I would find someone who understood this condition. I have come up empty in the Buffalo area where I live-even tried Rochester which is more progressive and all I could find was a social worker certified in hypnosis (of course, my insurance doesn't cover it) but I am wondering if that is anything you have tried. I am considering it even if I have to pay out of pocket.
Also, have you communicated with Lauren123? She got back to me about a dentist who used lazer treatment on her; apparently worked to some extent. I heard about it from a London Dr. who is using it in the UK with some success, but I can't find any equivalents here. Is that something you've looked into? I would love to hear from you- your posts are so heart-felt- I feel like I already know you.! God Bless..

Maggie45