Yikes! I'm so sorry for not only your dx, but for the lack of real care you have gotten in IN. Be encouraged that Mayo should be different. I went 12 years ago for a brain tumor that 2 neurosurgeons in MI said was inoperable. Mayo docs not only were willing/able to operate, but also able to diagnose accurately after operating. I've been symptom free since then. I would strongly encourage you to try and find someone to go with you though. Although there are lots of volunteers around Mayo to help you find things, it is a pretty big, and sometimes scary place.