I sent my records to Mayo at the start and they felt the same for me that they could not assist. I was going to resend it cause so much more has happened spread and other conditions but now after many other hospitals am waiting. I know a lady who was going to go to Hopkins and I think has been before for this condition to see a specific doctor. I wonder if you would be able to send some of your records there to view before going. When I went to Cleveland Clinic I stayed in a hotel near and they shuttled back and forth. They gave special rates to the hospital patients so I am thinking Hopkins may do similar. Do you have any places near you like University hospitals or teaching hospitals that may be you can get another opinion before. I have been to places like Cleveland Clinic and ucla and my best doctor so far is out of a teaching hospital in my home state 40 min away. In any regards I hope you find relief and answers asap.