Hi, @julieparton, I would like to add my welcome to Connect along with @lisalucier and other members. I'm glad you are asking questions and trying to learn as much as you can about your health. I can understand wanting to quit trying to figure it out but I like what your heart is telling you. Another way to look at it is it's not a patients job to diagnose. That's for the doctors to do but sometimes we the patient have to keep pushing and asking for answers. We really have to be our own advocate and I think that's what you are doing. I really agree with @lisalucier about getting a second opinion or a referral to another medical center.

I'm not sure if it's an option for you, but if it is Mayo Clinic is very good at diagnosing hard to diagnose and rare conditions with their patient centered care. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.