Thank you for sharing your experience. Since I wrote this message, I received a call from WashU and I am scheduled to see one of their specialists in October. It is a wait but I am willing to try almost anything. And I am learning to speak up, ask questions, and be, as you say, my own advocate because no one else will do the work for you. I will go and read your experience in the thread you provided and I might share mine although I am always hesitant because I feel no one really cares.
Thank you again for your reply.