Originally Posted by MAT52

Definitely I will ask if this new hospital can't help. It's a big teaching hospital and I've yet to see the rheumatology consultant but I am really sick of being passed about from neurology to rheumatology (and also endocrinology next month). If the Sjogren's test is negative then I plan to ask the neurologist about getting a second opinion. Does the fact that it started in my feet and now affects arms and legs and mouth mean NLD or LD SFN please? I'm from London originally and I might suggest that I pay for my own travel and accommodation if they will refer me. I am fairly sure that the neurologist here won't agree as she was pretty dismissive but the rheumatologist and oral consultant seem fairly on the ball. Thanks for your helpful suggestion. Great to find someone in UK who can advise and explain more.

Originally Posted by LouLou1978

Hi Mat - Sorry for the late reply. I am no expert but i thought that if you had it in your mouth, arms and legs it would be NLD SFN. I think most good neuros class this presentation as an inflammatory neuropathy. This presentation has been enough to get IVIG, however my Skin biopsy was unusual as it showed increased fibers, which the professor felt was in keeping with an inflammatory process. I am thinking if you got it done in London, they can then compare your biopsy to others. They can then look at all your other issues and may recommend ivig. I think you are right, if you don't get anywhere with these dr's then if you can get there, it may be worth a visit. Good Luck and keep us posted.

Originally Posted by MAT52

Thanks Loulou this is really helpful. However I'm fairly sure that a London doctor wouldn't be able to sort out IViG for me up here in Scotland. I am about to post about the immune mediated thing but very interesting to know what your neuro thinks about NLD SFN and the immune aspects of it. Mat x

Originally Posted by LouLou1978

Hi Mat,

There was a lady on here a while back who lived in Scotland, she had PN for 8 years, her local neuro referred her to Hammersmith Hospital in London, it was advised that she try IVIG by the professor there. I believe she has this every 3 weeks in Scotland and it helps.