[LouLou1978]

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 !

[Healthgirl]

When I was tested for genetic mutations for neuropathy, I was told that they were degenerative and progressive. Regeneration of nerve fibers doesn't seem to fit. It is a gradual ongoing loss as far as I know. What are all of your symptoms and what was your onset like?


Sent from my iPhone using Tapatalk

[LouLou1978]

Originally Posted by Healthgirl

When I was tested for genetic mutations for neuropathy, I was told that they were degenerative and progressive. Regeneration of nerve fibers doesn't seem to fit. It is a gradual ongoing loss as far as I know. What are all of your symptoms and what was your onset like?


Sent from my iPhone using Tapatalk

Onset started in 2012 with strange feelings in feet and toes going numb in slightest cold. Then while on holiday in a hot country in 2013 it felt as though there were raindrops on my head an all over as i was walking. It was the hot air brushing against the skin which seemed to confuse the damaged nerve endings to thinking it was water? I then went to a Neurologist in 2014 who thought i had SFN as i had burning in toes sometimes. After he told me what he thought, i panicked and got really stressed out thinking of what might happen. Read lots of awful stories on the internet. This then proceeded with full body stinging and burning. This continued and took some medication Lyrica. However after 3 months, when i calmed down, the pain stopped and went away. This was about January 2015. It has calmed down alot since and i get occasional stabbing/burning. Nothing like back in 2014. He mentions Toxic neuropathy, i wonder if this could be what caused it?