Originally Posted by LouLou1978

Hi

I haven't been on for a while but thought i would update you on my neuropathy journey. I have today seen my neuro. My neuro reminded me how rare my presentation was, being NLD and also with increased nerve fibers rather than decreased.

I have been offered IVIG as a trial (being in the UK on NHS is very difficult to obtain).

As i have mentioned before, when i first saw him in 2013 i didn't have any pain , just strange feelings all over my body. When he suggested SFN i was in shock and scared myself to death with searching the net. I then experienced a sudden onset of bodywide pain. After a few months this gradually subsided. I have had pain on and off which has been related to stress, but most of the time i feel nearly symptom free.

I asked my neuro if he thought this could be autoimmune, he said he can't prove it, but he thinks that i could have had a virus and which triggered variant of Guillian Barre Syndrome which only effects the small nerves.

Its difficult to know what for sure has caused it, but this neuro is pretty spot on, he has seen alot of SFN cases from working at the main hospital in London. He has also seen patients with increased fibres such as myself which is very unusual. He has put the IVIG trial on hold.

I do still get strange symptoms and flare ups, i wonder if this will be like this for the rest of my life. I wonder if it is getting better or gone away. Just wish i knew what had caused it in the first place.