Hello Stumpjumper my name is Beryl .....I have been suffering for many years from Polymyalgia Rheumatica.....but have been lucky enough to have a Doctor that has seen me through the awkward trials of having one of these diseases and I am now at a stage where I understand my limitations and therefore can live a useful life....I am 79yrs old so didn't full ill in early life as you have.....
My reason for answering you without any way of helping you is to say that I have all the faith in the World that you will be looked after by the Mayo Clinic and that it will help you live with and understand what is going wrong and hopefully find a way out of your distress ....
I notice that John our mentor has given you some information that hopefully will help .....I hope you will keep in touch so that we can follow you're progress and be pleased for you when your health is beginning to improve ......just understanding what is wrong is a big step to regaining your life again
Best of luck Beryl