Hi Elaine,

I understand exactly how you feel wanting to know where this is heading. As echoed by the other replies, they just don't know enough about this sort of thing. I dont quite understand why. I cant believe this is a condition that just magically started affecting people over the last 10 years. So many people must have suffered even worse than we do before the advent of skin biopsies. I was fobbed off terribly until I pursued the biopsy.

I saw a neurologist again this week, I asked him how many people he sees like me with full body SFN in all limbs and in the face, teeth even. He shook his head and said he doesnt come across many people like this. Argh. That's a great relief for everyone else in the general population but it just adds to the isolation doesn't it.

I have to be grateful for small mercies and just say at least I wasn't really young , like a child or 18 when this started. I am 36 so feel highly short changed as Im not old either but it could have been earlier. My main fear is staying physically and more importantly emotionally above water for long enough to raise my small son to adulthood.