Coffeegirl, I haven't been to Mayo, sorry. I wish lots of good luck when /or if your plan on going there. Do you have an appointment yet? Maybe Ewizabeth's doctor can help you?

butter1, Welcome to NT. Nice to meet you. It is hard to get a dx unless you have the "Classic symptoms" to a disease. Most times it's just a rule this in or rule this out, and lots of testing. Sorry to hear about all your symptoms. We all want/need to know what is wrong with us, when we don't feel well.

No one wants to get the wrong dx. They have to be sure. Good luck going to Mayo to you too.

Let us know how you both make out there and give us an update if you can. Bring all your tests, MRI's, blood work, Medication lists, and notes that you might have, with you when you go. All this saves time.

Is Cleveland Clinic in Ohio, or a NYC teaching hospital/ clinic a place you might want go? The University of Penn. is supposed to be good too.

Any teaching hospital or Clinic is good because they have so many different doctors. The more eyes and ears the better.