@tylerj I can see through your writing how very worried and frightened that you are. For you and your wife to go through 2 years with all that you’ve shared is heartbreaking. Since you are in Michigan I’m going to assume that Lisa has already been seen at Henry Ford or U of Michigan? Do you know if your/her insurance will allow her to go out-of-state of another opinion? You’d have to call your insurance company to ask that question.

Mayo Clinic is an excellent and caring clinic that more that meets its well-deserved reputation. You are a one day drive from Rochester, MN - a long day but doable in my experience. You can ask Lisa’s doctor to make a referral (this is preferred) however she (or you) can make the request yourself. Here is the link that explains how to request an appointment at Mayo Clinic.

Request an appointment at Mayo Clinic:
http://mayocl.in/1mtmR63
I know I asked this question above, but what other clinics has Lisa been seen in Michigan? Henry Ford? U of Michigan?