Thanks for your reply.... I know what you mean about the paucity of tests. The NHS here isn't really set up to investigate.

He told met that my nerve conduction tests came back 'in some respects better than normal'. He tested for tyhroid, b12 etc. and all came back fine, I have clear MRI's and he tested all my reflexes (results as above), stuck pins in me etc. (which just proved the numb patches and sensory loss).

I asked him directly if it was demyelinating or axonal and he couldn't find evidence of either. He had thought it was definitely HNPP before the nerve conduction tests.. but now said he wouldn't put me forward for genetic testing because the nerve conduction tests were fine and they certainly wouldn't be.

Could you tell me what tests I need in the short term to check this out?

Apologies that I am only just catching up with all of this.