I feel the exact same way as you do. and I still have not found a doctor that I like....they have all been so rude and laugh at me if I mention anything that I find on the internet. The one that I have now said to me when I asked a question about valium and it taking longer for your brain to retrain itself on it...and he said "oh so you think that you know more than the doctor's now do you?" and when I cried he said "why are you getting so worked up...your not going to die" So I sympathsize w/ you greatly......and am so dumbfounded that there is not more information out there to help us.....and no one can understand how awful it feels for us b/c we do look fine on the outside. I have never felt so alone until this illness.....and you are so right about how before the internet this would be so much for scary and hard to handle.