Update - Inflammatory Neuropathy
 

Hi there,

Its been a while since I've been on here.

I have NLD Small fiber neuropathy confirmed by punch biopsy . Mine was unusual showing (increased fiberes). In September my neurologist put me on a 5 day course of methylprednisolone, I don't think this helped.

I have just met up with him today, he is pretty sure my neuropathy is inflammatory/autoimmune, so is putting in an application for ivig, (NHS). He is quite hopeful this will be accepted, otherwise had a plan B.

He has a couple of ladies at his main neurological hospital in London who have had really good results, they too have NLD SFN.
His application is stating it is 'inflammatory neuropathy'. Keeping fingers crossed this will be accepted, not that easy through NHS, all other blood tests have come back normal.

Good luck on acceptance!

Hi Baba 222,

Thank you

loulou:wink:

Hi LouLou,

Let us know if you get accepted, and how the treatments work. I'm wishing you the best of luck :)

Praying you get the treatment and please let us know how it goes in the future.

Cliffman

Thank you, if this gets accepted I will let you all know. I will be over the moon if it does!:)

One of my neurologists tried to find a way to get me approved for it. He said he has major success with it for autoimmune neuropathy. Unfortunately I don't qualify. I am still dreaming of a day that this resolves itself. I hope you get it. Good luck!

Thank you Healthgirl, I hope you still continue to improve, I am sorry you couldn't get ivig approved, it is supposed to work for NLD SFN. From what I understand NLD SFN is autoimmune/inflammatory in a lot of cases.

Just to say thank you to everyone for all the support. While going through this for the past year I have had a horrific experience not just with the SFN but from 2 particular members of my family. My sister and her vile husband. I was told by my sister on a number of occasions that her and her husband thought it was ridiculous that I was seeing a professor in London, and that her husband thought it was 'funny' and that her husband had looked SFN up on the internet and it WASNT painful. When I actually got my diagnosis, she came round to my house and snatched the diagnosis letter out of my hand demanding that she take this to be photocopied to show her Dr. She was ranting and raving at me infront of my 3 year old. Shouting at me in my hospital bed after a bodged lumber punch, I now have nothing to do with them and never will. Luckily my husband has been great so am blessed to have them :)

That's just sad. With SFN, the old adage is so literally true: "Don't criticize me until you've walked a mile in my shoes." I hope things improve for you soon.