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Old 01-21-2016, 08:21 AM #1
Cliffman Cliffman is offline
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Default Immune-Mediated Small Fiber Neuropathy?

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

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Old 01-21-2016, 11:17 AM #2
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Mine seems to be, so they think. Have you read otherwise? Are you surprised?

Thanks for the article by the way.

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

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Old 01-21-2016, 01:39 PM #3
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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.

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Old 01-21-2016, 01:47 PM #4
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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.


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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
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Old 01-22-2016, 06:56 AM #5
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Default 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.
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Old 01-22-2016, 08:47 AM #6
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Originally Posted by glenntaj View Post
--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.

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Old 01-25-2016, 04:45 AM #7
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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
acute means severe experience, it could mean sudden severe onset of symptoms, unlike some forms of sfn, which is usually gradual slow(eg,diabetes)/
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Old 01-25-2016, 01:52 PM #8
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I don't think SFN Causes autonomic neuropathy which I had before the SFN appeared. SNF is an autonomic neuropathy among many.

My neuropathies appeared in roughly this order: sympathetic/parasympathetic, autonomic, peripheral and small fiber. I'm sure there was enormous overlap as I have a high pain threshold and have ignored symptoms and problems all of my life.

I began life as a infant with severe eczema, systemic infections (boils), respiratory and ear infections, and moved on to other things over the years. My survival depends upon moving through pain most of the time.

It turns out that I have a basic disorder of my Immune System and I have IVIG monthly to increase the amount of IgG in my body. My disorder is called CVID and is a primary immune deficiency disorder. My body has very low IgG, and IgM.

My deficient Immune System attacks also my body (systems and organs), and has caused all of the woes and ills I have today, with the latest diagnosis of Small Airway obstruction in my lungs.

In the long run, it doesn't matter what causes what, since most of our conditions cannot be prevented or cured, but only 'managed' with some relief of pain and suffering.

I am so delighted to have leg braces which allow me to walk again, and stand upright. I put them on first thing i the morning and take them off last thing at night.

Thank Goodness for forums like these for they have provided me with information and coping skills.

Hugs, ElaineD
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Old 01-25-2016, 02:15 PM #9
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Yes, that's why I said it causes autonomic dysfunction, not neuropathy. The issues I have with my heart and blood pressure are not neuropathic in nature but are autonomic dysfunctions.

Well, for me it is quite important what's going on exactly and what can be done. I'm in my 30s and haven't resolved myself to living with this or allowing it to get worse, and will do what I can to heal. If that's not possible, that's fine, I'll have to live with that, but I refuse to not do all that I can first.

But I agree that this forum is excellent for helping us cope and to learn. I'm grateful for that. I'm glad it has helped you as well, and that you're in a place where you've come to terms with what is happening. Best of luck.


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I don't think SFN Causes autonomic neuropathy which I had before the SFN appeared. SNF is an autonomic neuropathy among many.

My neuropathies appeared in roughly this order: sympathetic/parasympathetic, autonomic, peripheral and small fiber. I'm sure there was enormous overlap as I have a high pain threshold and have ignored symptoms and problems all of my life.

I began life as a infant with severe eczema, systemic infections (boils), respiratory and ear infections, and moved on to other things over the years. My survival depends upon moving through pain most of the time.

It turns out that I have a basic disorder of my Immune System and I have IVIG monthly to increase the amount of IgG in my body. My disorder is called CVID and is a primary immune deficiency disorder. My body has very low IgG, and IgM.

My deficient Immune System attacks also my body (systems and organs), and has caused all of the woes and ills I have today, with the latest diagnosis of Small Airway obstruction in my lungs.

In the long run, it doesn't matter what causes what, since most of our conditions cannot be prevented or cured, but only 'managed' with some relief of pain and suffering.

I am so delighted to have leg braces which allow me to walk again, and stand upright. I put them on first thing i the morning and take them off last thing at night.

Thank Goodness for forums like these for they have provided me with information and coping skills.

Hugs, ElaineD
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Old 01-23-2016, 09:36 PM #10
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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
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