Hi Karma, welcome although obviously we would rather you didn't have to be here, we are a select bunch of lovely people honest...

I'm UK as well, and always feel so sorry for you folks dealing with insurance companies and workman's comp on top of dealing with this horrible condition, which alone is another to drive us all a bit loopy.

Sadly, it's not easy for any of us to find a good doctor that is willing to both work with us, and learn themselves to understand a condition very few really know about. It's a rough time finding someone, but it will be worth the fight, so keep at it until you can feel more confident with someone on your side. Good luck wi the search.

I'm sorry you're feeling so rough, I would say that after feeling really crappy for the first 4-6 months with this, I did very slowly start to feel a bit more human again. A lot is to do with learning to cope better with the things it throws at you, but also I think the disease settles down a bit after initially going berserk. I have good and bad patches now, but more good at the moment. I hope yours eases off a bit, must be a frightening time.

The sweating/body temp issues are fairly common I suspect. I don't deal well with heat or cold now.. Brain issues are also common, there is a thread at the moment discussing the weird things that go on for many of us - slurring speech, not being able to find words, losing focus, all manner of frustrating and scary things. Hang in there and keep believing that you can find a way through this to a full life again It might not be the same, or what you hoped for, but it can still be good...

Best of luck,

Bram.