LizaJane has said it all and said it superbly.

Having a 'name' is comforting in that IT has a name, it doesn't really need to have one. Most important is getting the right treatments! I think from what you've said the docs aren't giving up on you...they're just stumped. As long as they're stumped they will keep at it - Hopkins is well known to be that way.

I tho would never EVER want to be a doctor! Imagine....seeing 30 +/- of US each day? Nope, NO way! - j