My husband was transported to Stanford University with your same diagnosis. Like yourself his was left untreated. His primary physician was annoyed with the lack of care my husband received so he gathered all his tests/reports/medical records and right now University of San Fransisco is willing to consult with us. Nothing definant but we again have some hope instead of feeling hopeless. Get another referral and don't take "No" for an answer. If you know of a hospital that is'nt afraid to try and save lives, request that one. Good luck to you.