Dear All,

As you know have been diagnosed with full body SFN in 2014 with increased nerve fibers. This all started in December 2012.

My younger sister who is now 36 has been diagnosed, her symptoms also started in December 2012 - her letter says the following:

" We proceeded to a skin biopsy of the calf, which showed reduced number on the intra epidermal fibers for the structural marker PGP 9.5 , at 2.3 fibers/mm, the normal range between6.5 plus/minus 1.4 fibres. Other markers were similarly reduced, and axonal swellings were observed, which can be a harbinger or nerve terminal degeneration. However there were nerve fibers at the junction of the dermis and epidermis, particularly for GAP 43 which is a specific marker of regenerating fibers.

I have looked at her sisters notes and she has primarily an excess of regenerating nerve fibers.

The above patter in skin biopsy has been seen in patients with immune or inflammatory conditions and I would be grateful if you might review these. The patients who have toxic neuropathy are no longer are exposed to the toxin, such as chemotherapy, or indeed nerve injury , may also show a similar pattern.

He then goes on to say that it is worth trying immune therapy including intravenous immunoglobulin. ( I have a trial of this on hold at the moment).

The course of her sisters condition would be of interest.

So can anybody make sense of that.? Am still worried this may be some sort of genetic neuropathy but professor seems to think not?

My sister has not had the pain associated with SFN yet....she has hot feelings and crawling.

I would be grateful for anyones comments??

Thanks !