Originally Posted by LouLou1978

Hello there,

For those of you who don't know my story, i have had symptoms of SFN from the end of 2012. I was 36 at the time, symptoms (not painful) but buzzing and funny feelings. Fast forward to 2014 when i saw a really good neuro who suggested this could be Non length dependent SFN. He sent me to London for a skin biopsy. The skin biopsy revealed increased nerve fibers, (which I have been told is very unusual). Neuro told me 80% of SFN suffers have reduced nerve fibers. He only sees about 20% with this presentation. It was indicated in the professor's letter who done the skin biopsy this was inflammation.


While i was completely stressed out about being told i had SFN within days the pain was horrific all over my body. My scalp was the worst. After a couple of months the pain subsided, I calmed down a bit and pain almost went away. I have been in this position since the end of 2014 but i am now getting sharp pains down below and also i have had burning tongue and lips. I didn't have pain in these places when i had the all over burning. It was everywhere else. However i had always had buzzing all over my body.

My last appointment with my neuro went well, he suggested that i may have had some sort of Virus which attacked all the nerves in one go, and the pain i get from time to time is just old nerve damage . He mentioned possible Sensory Guillian Barre.

I'm in the UK and have been offered a trial of IVIG, i have tried 5 days of iv steroids last year which didn't seem to make any different to the the symptoms . My next appointment is not until October. I am wondering what to do, as my biopsy was unusual and my symptoms are strange, as the full body burning has gone away but i seem to get pain in places i never had before. Any ideas?

I am wondering if i should go for the IVIG......