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).

Particularly with small fiber neuropathy--
 

--there may be both inflammatory and non-inflammatory etiologies that may or may not show "standard" inflammatory markers. Particularly if there is an autoimmune attack by antibodies specific to antigens on small fiber nerve, this may not show up on the usual inflammatory tests as there may not be the same kind of lymphocytic infiltrates usually associated with measures of inflammatory markers (the damage may be caused by antibodies not only hard to measure but very specific to the individual).

Still, in many small fiber syndromes now designated "idiopathic", autoimmune processes are suspected. These may just be as of yet unPROVEN. It is important to note that most of the antibodies to specific peripheral nerve antigens--the type Dr. Norman Latov listed in his Quest diagnostic advisory paper--have only been discovered/recognized over the last thirty years or so.

Thank you glenn :-) From your very informative response I understand that this means I do not neccessarily need evidence of inflammation either systemically or within the nerves for this to be immune mediated. It sounds that the list of autoimmune processes or autoantibodies may however be very long and this may mean a specific autoimmune disease may never be found then. I will pursue IVIG ferociously if there is some hope it can help slow progression. I await the day a faulty immune system can be 'cured.' Hopefully in my lifetime!

Joanna I have almost the exact same overarching question as you do. Unlike you I can't tolerate Gaberpentin even at the lowest dose - nor Amitriptyline or Cymbalta so far - although I did manage Amitriptyline for over 3 years before the heart palpitations got the better of me.

As I think we've discussed I'm having my skin biopsy done tomorrow by my GP - two punches on each leg. I've had a lumbar puncture, nerve conduction tests (no heat one as the neurophysio said that this isn't done in our hospital as it the equipment was too expensive), serum blood tests to see if this is immune mediated neuropathy and MRI of brain and neck. Nothing has come up so far. The only thing I always have is a high to elevated ESR/ Sed rate - which they say does relate to my autoimmunity but isn't specific enough to help establish more than this.

I understand how sad all this is making you. I'm in an abject state of terror just now about my life and where it's all going - but just now the nerve pain in legs and arms is the least of the terror I think as things have mostly gone numb. I see my rheumatologist on Thursday but he is a fence sitter and defers to others including the neurologist. All I can say is that any result that shows up something has to be progress for either of us and I think we both have to keep pushing hard for them to get beyond the term idiopathic and start looking for proper solutions which might set our defective immune systems back on the right track. That's where I'm pinning my hope anyway. Mat x

What autoimmunities were you tested in the past for?

Hi neuroproblem,

I am diagnosed with an autoimmune called ankylosng spondylitis (AS), it is a rheumatic disease. I have had this since 2001. The diagnosis is by MRI scans and genetic test for a particular HLA gene type. I also have psoriasis now and again and this has been popping up since the nerve problem commenced. I also suffer from uveitis which is an autoimmune problem afecting the eye. This comes with the AS. The tests I have had for immunity are CRP and ESR which I understand checks inflammation levels in the blood. These arent particularly high so my GP would send me away based on this alone. I have had tests to check thyroid, liver function etc. All the tests for B12, Vit D etc and diabetes. This is it in terms of blood tests or autoimmunity.