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Old 03-16-2015, 12:18 PM #1
JoannaP79 JoannaP79 is offline
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Join Date: Feb 2015
Location: South England
Posts: 246
10 yr Member
JoannaP79 JoannaP79 is offline
Member
 
Join Date: Feb 2015
Location: South England
Posts: 246
10 yr Member
Default SFN finally confirmed, can you help me understand results?

Hi everyone,

Although I knew I had it, I now have it in writing that I have significantly decreased nerve fibre density in legs following skin biopsy, and QSR shows abnormal reaction to temperature in feet, all in keeping with SFN. I have been in tears all day as I kind of hoped I'd get a diagnosis but I also kind of hoped something might come back saying, oooh your nerves look a bit sore, but they will be ok!
This only really caused me pain problems about 4-5 months ago and now the pain is so hideous beyond words that I am taking 2700mg gabapentin and sadly tramadol, and as many probably know from their own experiences there is still alot of pain.

My main question is this.....I have autoimmune problems already and one confirmed autoimmune disease not supposedly related to sfn. I therefore believe very strongly that this SFN is due to my stupid immune system in some way. My results however do not show signs of neuro regeneration which I understand to be indiciative of ongoing inflammation within the nerves. Does this mean then that the SFN is not caused by autoimmunity? I have read so much for months on autoimmunity / sfn etc and realise Im still confused by the issue of inflammation and autoimmunity. Can autoimmunity be at work, via say sjorgens without the nerves themselves showing inflammation? I hope that makes sense. My blood tests havent shown particularly high levels of inflammation so for this I am sent on my way despite my pain and evidence of autoimmunity symptoms throughout my body.

Im seeing my neurologist on Thursday and want to also go back to my rheumatologist about treatment for my entire joke of an immune system which has caused me no end of problems. If Im not informed and pushing, I will be sent home with a smile and another bag of tramadol.

IVIG has been mentioned a few times and I want a shot at trying it seeing as I have so many autoimmune symptoms that are driving me nuts and ruining the quality of my life at the grand old ae of 35. I know that being in the UK and at the mercy of the NHS I will be fobbed off at every opportunity if there is enough reason to deny this.

I have tried steroid shot in past and this did nothing. (It was after the skin test btw).
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