@shanamarie22 Be a "squeaky wheel", no matter what that takes. Keep track of who you speak to and when. Knock on as many doors as it takes. There has to be an answer, and someone who will assist you!
Ginger

@shanamarie22 How far is a large, highly regarded medical center? There are no teaching hospitals within about 50 miles? The ones closest for me are about 55 miles away but it’s worth it, the doctors there are so much more experienced in conditions that are out of the ordinary simply because they see more of them. They may tell you the same thing that you have been told, but at least then you can feel that you have done all that you could.
JK