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Small Fiber Polyneuropathy Questions
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meg_k posted:
All, has anyone been tested for small fiber polyneuropathy since the study that came out earlier this year stating that roughly half of those in this *small* study who were previously diagnosed with Fibro actually had small fiber polyneuropathy?

I know there was some caution about this study in this Community, wanting to avoid getting our hopes up *yet again* for a cure that won't be forthcoming. Understandable.

Yet, I find this study fascinating! There was an article in USA Today (?) about a woman who has/had Fibro and was dx with SFPN. They were giving her human immunglobin treatments and she said her pain went from 10 to a 4. Now, whether I believe that or not, I don't know. It's the underlying science -- belief that the nerve damage in SFPN is actually auto-immune -- that gets me. The immune system mistakenly attacking nerve cells -- similar to MS and causing the extremity tingling and burning and pain that a lot of us feel -- as well as exercise intolerance. There has been debate for years about whether FM is rheumatologic/autoimmune or neurological or both of the above or none of the above.

The autoimmune nerve damage idea extends to our internal organs -- theory being that our immune systems may attack nerves in our GI tract, for example, as well causing IBS-type symptoms as well as malabsorbption that results in many of us having vitamin deficiencies.

I am not a professional science person but rather a geek with FM that finds this stuff interesting and -- time will tell -- possibly promising.

Sorry I cant post the links right now. as I am on the handheld.

Meg from MN
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Anon_10089 responded:
I also think this is interesting and worth further thought. And to emphasize, this is different than the study about the nerve shunts in the hands and feet.

The reason I think there may be something to this, is the fact that we have such varying symptoms. For example, I have mostly deep pain but no burning or tingling (thankfully). Also, some people with FM seem to get sick often or run low grade fevers while others of us have pretty strong immune systems. Perhaps this Polyneuropathy is part of the puzzle as to why we are all so different.

It's something to research. Thanks for starting this discussion. Hopefully we'll hear more about this--it's always good to be aware!
 
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meg_k replied to Anon_10089's response:
Anon,

Yes, it's a different study than the nerve shunts. But, if people dianognosed with FM do have some type of nerve pain, whether its truly SFPN or not, if we have "more" nerve shunts than most people but they are malfunctioning or damaged, the impact should be higher on us than the general population?? Basically, I'm saying the findings of these 2 studies may "fit" together for a more comprehensive explanation??

Meg
 
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bette_kaffitz responded:
Meg,

What kind of autoimmune antibodies are they talking about? I don't know about the rest of you, but that day when I had every test known to man, my neurologist checked almost every line on the lab request and even added four more. I know there were at least 7 different antibody tests done. Yes, time and research have marched on, but most of us have had numerous testing done for Lyme, Lupus, rheumatoid factor, and just about everything else.

Let's keep our minds open and our fingers crossed.

Hey, I'll take a level 4 pain day--any day. Remember, level 10 means you cannot think. Don't even recognize your pain. Just moan, groan, and carry on. Can't carry on a conversation. (Been there, done that.) Hope you never experience a 10.

Bette
 
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meg_k replied to bette_kaffitz's response:
Bette,

I dont think there have been any specific antibodies identified. This is all just theorizing at present. Yes, like lots of us probably, I've been tested for every autoimmune disorder known to humankind, but none of the tests - RA, lupus, sjogrens -- came back positive

Meg
 
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missist replied to meg_k's response:
This is something that has gotten my attention too. I was planning to print out some info on it to show my neuro when I go in. I was thinking now that I see a neuro--maybe she would look into that for me. I've had a lot of auto immune testing too--- my ana has been positive some. I also sometimes have had hives from cold--which is better since we moved to the south--that can be auto immune. There are many individuals in my extended family that have auto immune disorders including my mom. She also had a lot of neuropathy problems in her 60s and spine problems/arthritis, died at 69 after about 2 years of going down hill due to fibro, spine arthritis & osteoporosis--becoming immobile mainly and her heart just gave out. She & I also have in common that we both had rheumatic fever and mitral valve issues-which her youngest sister had--and she is now in a wheel chair with multiple issues and fibro too. I think--all these things are often co-morbid and in my family it seems there are a few women in the past who have had issues so severe as to lead slowly to their death.

I believe you need a punch biopsy to dx the sfpn- (sp?) I think it might be worth asking for one if you have similar symtoms. Also I think--maybe if you use RX meds that also work for neuropathy and they help you--might be a hint of a direction for you.
Mary
 
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nononsenselady replied to missist's response:
Mary, this is off the thread subject, but when you said you moved south and some things were better, I found that interesting. We go to Florida for the month of February and I feel much worse. We live in Illinois which isn't great but Florida is really bad. I ache and burn terribly. In fact we are going to California this year in hopes that that will be better. Where in the south do you live and has it helped in other parts of FM besides hives due to cold?
Laurie
 
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Anon_10089 replied to nononsenselady's response:
Hi. I live in California and it is rarely humid here. I don't do well in heat but a trip last March to Thailand showed me I do even worse in hot humidity. If you were in higher humidity in Florida, perhaps that was the issue. Hopefully California will be better and there are so many climates here anyway!
 
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booch007 replied to bette_kaffitz's response:
Good orning Meg and Bette,

This sounds similar to CIDP. Chronic inflamatory demyelinating polyneuropathy...( a mouthful)) To my knowledge diagnosed with biopsy of the nerves in the periphery. My nephew has this and it is like MS of the peripheral nerves. a waxing and waning.

Extremity dysfunction when a motor nerve is hit. he is on imuran and prednisone for the immune system attack. We do mirror some things. I think he had high inflamatory markers where I do not have any positives in testing other than in exam.
The IGG infusion did nothing for him so that was not an option. (everyone different there too)

Just sharing. The body is an amazing machine and it can get "out of wack" with persistant negative influences....I truly hope science is on it's heels and ours to help us all.

Hugs., Nancy B
 
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mnjeepguy responded:
Good discussion people. The more information we have the better equipped.


Cory
 
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missist replied to nononsenselady's response:
Hi I live in the uppland part of south carolina between columbia and charlotte nc. I us AC between late april or may and through on into sept. so-- don't get a wrong idea--I can't handle humidity well either. Florida now they have a bit heavier than where i am. The coastal/southern parts of SC are unbearably humid I think.

I very seldom have the cold hives (uticaria) becuase I am rarely outside much when it is cold--we do get cold--but it is very brief.

This year I had it once when we had surprise very cold spell.

I do think it is healthier to be in a warmer climate if you can-- because you will tend to get out more and get more sunlight. Now my inlaws live in Florida and are in great health-but they do not have fibromyalgia--it is a tough one as you have a very sensitive system and its really hard to find just the right temp/humidity to be comfortable and not exascerbate some kind of symptom. Mood--for me is big-- I also lose strength and energy on days like today that are gray and cold.
 
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meg_k replied to missist's response:
I'm with Mary. I think when I go in to the Neuro for Migraines next I am going to ask about getting tested for SFPN. Yes, Mary, I do think it is tested by punch biopsy. Most likely, it will be just one more thing on a looooong list of illnesses I don't have. I am more curious than anything at this point about it. Not letting myself get my hopes up.
 
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meg_k replied to meg_k's response:
Ok, FMily, here is an update on this issue. Progress! This may help you, too!

I got in really fast to the Neurologist (she had a cancellation). So lucky! I brought in copies of the abstracts of the journal articles about how a lot of people with FM may actually have Small Fiber Polyneuropathy (SFPN). I expected her not to take me seriously, but she did!

She re-examined my feet & legs and was concerned about the numbness in my feet along with the constant tingling and shocks I get sometimes. (Sound familiar, FMily?) Neuro then scheduled me for an EMG (the "poke and shock" test), which I will have Friday. (UGH!) She wants to rule out Long (Large?) Fiber PN first because if that is an issue we need to identify a cause. Then she said I may have a punch biopsy for SFPN depending on what the EMG shows. S---t, I hope I don't have MS!

She said she had not seen the recent studies about neuropathy and FM, she was glad I brought them in. She seemed to totally buy the idea that FM can be (at least in part and/or for some people) a disease in which the immune system attacks certain nerves. She said the problem is, we don't have a test for the antibody yet like we do for lupus, RA, etc. but we may some day. Cool!

Total validation after so many medical visits involving invalidation!!! Do you hear me on that one, FMily?

I will let you all know how EMG goes, etc. to see if it may be worth others pursuing.

Wish me luck!
Meg
 
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missist replied to meg_k's response:
good luck Meg-- will be interested to see what you learn.
Mary
 
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An_254992 responded:
Good info.. thank you.


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