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.