Immune-Mediated Small Fiber Neuropathy?
 

acute onset SFN can be immune-mediated? page 7 from the link below.
http://30g7el1b4b1n28kgpr414nuu.wpen...Newsletter.pdf

Cliffman :)

Mine seems to be, so they think. Have you read otherwise? Are you surprised?

Thanks for the article by the way.

Hi David,

No, I'm not really surprised just confused as to what constitutes an "acute onset". For example mine spread to most body parts in 6 month's but I'm not sure that means "acute onset". The reason I question it is because they have not found the cause of my SFN and there was no mention of looking for elevated spinal fluid protein. Plus, I was told IVIG would not help. I suppose in most instances by the time they do find the cause the damage has already been done.

Cliffman :)

Hi Cliffman,

I see what you mean. I mean, perhaps I'm wrong, but I would describe mine as acute or subacute, thanks to a clarification by Maddisongrrl a while back. Mine spread over about the same number of months. Of course, I look back, as I've said, and see some signs going back months and even a few years. I don't think they just know very much about neurological issues, PN and especially SFN. They are reaching in the dark as far as I see it.

They've not found my cause either, but I like to think that it's inflammatory or leading to inflammation and once that's cooled, if it is at some point, the nerves can heal. Do I think I'll eve be 100%? No, I don't. It's probably more likely that I'll degenerate even more. But this ailment is just so unpredictable.

Thanks for posting this. I found it useful.

This has been known for a while--
 

--and has even been referred to with its own acronym--ASFAN--acute small fiber axonal neuropathy--in a few papers (some of which, if I recall, are linked to in the Useful Websites section of the board). My neuropathy, which occurred in hours/days, seems to fit into this category.

To clear up the "acute" vs. "sub acute" confusion--while there is some dispute about exactly what constitutes each, and there is some blurring at the borders, usually "acute refers to an onset time period of under two weeks, and "sub-acute usually refers to an onset time period of two to eight weeks. After that one usually gets into the realm of "chronic", in which changes in condition are not that noticeable on a day to day basis, but are only appreciated in longer term retrospect.

Thank you Glen for talking the time to clear that up.

Cliffman :)

I spent ages replying to this post only for it to disappear into the ether!

I think mine is classed as immune mediated because I have a long history of autoimmunity and raised inflammatory markers plus paired oligloclonal bands in my spinal fluid. Still I'm passed from parcel to post because nothing else shows up in my immunoglobulins or other immune function tests.

Re onset - mine could have been slow or acute depending when it actually started. Prior to sudden onset of RA symptoms I had experienced heat flushes in my arms/ wrists for about a year. I assumed at the time that these must be a faulty wired menopausal feature. But suddenly one morning my wrists were excruciatingly painful and my soles burnt so badly when I touched the floor that I could barely walk to the bathroom. Then came many months of acute Polyarthritis which was accompanied by flashing pain in my hands that would have me gasping.

Now, two years on RA has gone away but the small fibre neuropathy continues to rage and progress. So I really can't say whether this constitutes an acute onset or not. All I know is that I suffered 45 years of severe eczema and episodes of rhinitis and total alopecia but overnight this disappeared with the start of my menopause. It has never returned. So I'm optimistic this might go away in the mysterious manner in which it arrived.

My RA upped and left after two years of taking cytotoxic drugs. Now I'm left with this widespread SFN which covers most of my body apart from my tummy - and I am resigned to living with it for the time being. I am used to feeling as if I've been rubbed everywhere in deep heat/ chilli powder with ice cubes - and topped off with ants nest sprinkles! :cool:

But in the back of my mind is always the expectation that it will disappear as fast as it came one very fine day. Everything else has so why not this?

I have the occasional few days where it recedes to just a numbness with faint tingle and I rejoice quietly and hope like hell this is it. Only for it to come rudely back like an uninvited guest :hug:

I have an immune disorder called CVID, which is a Primary Immune Deficiency.

Not only does my immune system fail to protect me with adequate antibodies, it also attacks my systems and organs doing damage.

By the time I realized I had small fiber neuropathy, last fall, I had so many other conditions going, and I was already 73, that I just rolled with it, and now I take 3600 mg of gabapentin daily, which stops the worst of the discomfort.

I'm curious to know what problems SFN causes besides acute discomfort. It doesn't seem to damage anything in my body, but I have had so many other damages so much earlier that I may not have connected SFN with lung damage, or nerve damage to my legs (Profound PN) or all the other miseries.

So many here have SFN and are taking it very seriously. I suppose if it had been the first thing to show up and I was 25, I might have been more worried.

The worst was the feeling of hot needles sticking into the end of my fingers. I'm so glad that is gone.

Hugs, ElaineD

SFN can cause quite severe autonomic dysfunction affecting important organs. So perhaps it's worth looking into, given your other issues, I don't know. :)

acute means severe experience, it could mean sudden severe onset of symptoms, unlike some forms of sfn, which is usually gradual slow(eg,diabetes)/