Hi, Delandra! I strongly agree with Jo. A University Hospital would be your very best bet, but I've been there, too, and there is one thing you should be very aware of. If you go to a place like the Mayo Clinic, and they flub your dx, you may be stuck with a wrong dx for years and years, because nobody else wants to contradict the Mayo, or the Hopkins. I've been in contact with both, but haven't actually been to either. Don't give up! I've gone seven years now without a dx for my "sydrome?!?", and just now I seem to be getting somewhere. And guess where I got the info? Here on NT, but after a few years of hanging around studying these things and listening to people. Whatever the future holds, I wish you the best of luck!