Hi @nowayback, Despair, depression and suicidal thoughts often accompany a complicated diagnosis. You are not alone. Although I can imagine that the lack of response here made you feel more alone than ever. For that I apologize. We are here. Fellow members have talked about mental health. You can see this discussion started by @alpaca. I hope more will join in to share their experiences.
NoWayBack, I assure you that the lack of response here is not an indication of lack of caring. You certainly are facing a very difficult situation with few answers and few people who have travelled the path before you. Is it possible for UK doctors to consult with specialists at Mayo Clinic?