Originally Posted by MAT52

Hi LouLou. I haven't had the proper biopsy for SFN - just a rather homemade one taken by my island GP last year and sent off to Edinburgh - showed nothing at all - but whether GP conducted punch biopsy from the right part of my calf I really don't know!

The only things that have appeared for me have been raised to high levels of inflammation in my blood and same from spinal fluid in the form of paired oligloconal bands. Recently my ANA was found to be a clear positive and elevated IgG and IgA as well as elevated Red Blood Cells (my normal). This is why I'm hoping that the lip biopsy shows up positive for Sjogrens as it would explain a lot and perhaps lead to further treatment options. However my mouth and eyes aren't especially dry so I'm not expecting too much from the results.

If I was offered IViG I'd most definitely try it. I've asked my previous neuro several times but been told that my SFN has not been confirmed as immune mediated. If your results show that yours had I really would grab the treatment option myself.

I too have the burning gums and lips - the most annoying aspect of SFN because it's oral and therefore affects our lives adversely day in day out. My sister has it too but hers is in the roof of her mouth and tongue. She's had it for two years - along with very bad back - but is none the wiser.

Originally Posted by LouLou1978

My tests have all come back normal. Nothing to show it was immune mediated. My neuro says nld sfn is an inflammatory neuropathy. He is very clever and got my trial of ivig agreed through the panel. He also got another lady on this site ivig. Her previous neuro would not entertain it. Mat have you thought about being referred to London and see the professor there who specialises in sfn and skin biopsies. Would it be worth having it done again?

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.