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Old 10-28-2015, 03:01 PM #1
baba222 baba222 is offline
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Originally Posted by LouLou1978 View Post
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!
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Old 10-28-2015, 03:36 PM #2
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Good luck on acceptance!
Hi Baba 222,

Thank you

loulou
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Old 10-28-2015, 08:14 PM #3
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Hi LouLou,

Let us know if you get accepted, and how the treatments work. I'm wishing you the best of luck
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Old 10-28-2015, 09:48 PM #4
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Good luck on acceptance!
Praying you get the treatment and please let us know how it goes in the future.

Cliffman
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Old 10-29-2015, 03:11 AM #5
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Thank you, if this gets accepted I will let you all know. I will be over the moon if it does!
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Old 10-29-2015, 06:29 AM #6
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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!
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Old 10-29-2015, 10:57 AM #7
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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.
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Old 10-29-2015, 12:40 PM #8
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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
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Old 10-29-2015, 02:28 PM #9
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Originally Posted by LouLou1978 View Post
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.
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Old 10-29-2015, 04:23 PM #10
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Heart Hey there LouLou
Quote:
Originally Posted by LouLou1978 View Post
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 is a pretty mean sister you have there !

I have severe SFN and from the info I get on the internet it's the MOST painful of the neuropathies. Just sayin'

I have never said that to anyone on here because we are all suffering and no one knows what another goes through. But for your purpose it's a good comment.

Glad you no longer have to put up with her or her vile husband.

Take care.

Debi from Georgia
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