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-   -   New here--Large Fiber PN (https://www.neurotalk.org/peripheral-neuropathy/127869-fiber-pn.html)

smae 07-12-2010 08:40 PM

I did read that whole site... and I found a lot of very good information, but not about large fiber PN. Maybe I am just stupid. I don't know. I am new to all of this and I am not medical minded. I don't understand medical terms and that's why I am asking for a website that explains it in simple, everyday terms. I just want to know in everyday language what the differences are in the symptoms between the two (large and small fiber). If I have all the symptoms of small fiber, why does my neurologist tell me I have large fiber PN? I can't find any websites that explain large fiber PN and what symptoms come with it (that I can understand). I did order a book off of Amazon, but it hasn't arrived yet.

echoes long ago 07-12-2010 11:00 PM

this is a simplified explanation

SMALL FIBER NEUROPATHY

Small fibers (C-fibers) provide mostly sensory and autonomic innervations. The sensory fibers (unmyelinated and thinly myelinated) perceive pain and temperature changes. The autonomic fibers controls for heart rate, blood pressure, sudomotor function and gut function. Small fiber neuropathy mostly involves thermal perception, which means that pain is in the form of cold, warm and hot. Clinical presentations of small fiber neuropathy include hyperesthesias ( increase in sensitivity to stimuli, such as pain out of all proportion to injury or even contact with an object), hyperalgesia (increased sensitivity to pain), excess sweating and impaired microcirculation.

LARGE FIBER NEUROPATHY

The large fibers are myelinated motor fibers. These fibers are responsible for motion control, touch (such as numbness), proprioception (knowing where your body is, such as if your feet are numb you will not know where they are on the floor or even their position) and vibration. The myelinated sensory fibers also perceive for touch, proprioception and vibration. The clinical presentation in patients with large fibers neuropathy are impaired vibration, gait instability, weakness, numbness, small muscle wasting and commonly radiating or cramping pain at night.

glenntaj 07-13-2010 06:54 AM

I would suspect--
 
--that you probably have both large and small-fiber disruption, given your poor nutritional status. But the testing you may have received may have only revealed the grosser large-fiber disruption; small-fiber is harder to definitively diagnose (the current gold standard is skin biopsy to measure intrepidermal nerve fiber density and condition).

Large fiber neuropathy can be found using more standard nerve conduction/EMG tests, and since abnormal readings on these usually mean fairly extensive and unequivocal damage, I'd say you're pretty compromised.

AND--what doses of supplements are you taking? It's pretty standard post-bariatiric surgery that there be massive supplementation, as most of the area from which you could absorb nutrients is gone. I would think, for example, you should be on at least 5000mcg/day of B12, to allow passive absorption of 1-2% of that amount. I'd also think you should be supplementing calcium, magnesium, the other B-vitamins, D (probably at least 5000IU/day if you don't get out in the sun much) and definitely essential fatty acids . . .

smae 07-13-2010 07:44 AM

Thanks, echoes long ago, for that information. That makes some sense to me, and that's what I've been looking for. It does sound like I have both large and small fiber, as glenntaj has suggested. I didn't know that was possible, but I have symptoms of both. I had a lot of tests, but never a skin biopsy. I appreciate you giving me that information!

smae 07-13-2010 07:49 AM

Quote:

Originally Posted by glenntaj (Post 674971)
what doses of supplements are you taking? It's pretty standard post-bariatiric surgery that there be massive supplementation, as most of the area from which you could absorb nutrients is gone. I would think, for example, you should be on at least 5000mcg/day of B12, to allow passive absorption of 1-2% of that amount. I'd also think you should be supplementing calcium, magnesium, the other B-vitamins, D (probably at least 5000IU/day if you don't get ou in the sun much) and definitely essential fatty acids . . .

I don't have my medicines with me right now, and can't get to them... but I know I'm taking 5,000 IU/day of D3 a day (and it is in my multivitamin as well). I am taking B12 every day and it is in my multivitamin and I also get a monthly B12 shot--my B12 levels are where they need to be, so I am getting enough of that. I take a calcium supplement (which also has Vitamin D in it) every day. I take a B complex as well and my doctor said that those levels are all where they need to be. I am not taking any magnesium--I had asked my doctor if I should take some because a friend suggested it, but he said not to take it because my magnesium level was high enough and he said that I was fine without it--I take about 30 pills a day and he said that if I didn't need it, that I didn't need one more pill. I don't know what you mean by "essential fatty acids"... so I suppose I'm not taking those....

smae 07-13-2010 04:48 PM

I don't know about the rest of you, but my my toes are very very sensitive. The front half of my feet are numb, and that is where the nerve damage is. It feels like all 10 of my toes are broken, and even a slight touch, a sheet covering at night, or a slight breeze from a window or fan can send me over the edge and make me scream or cry out in pain. I walk on my heels and the side of my feet because I can't put any pressure on the front of my feet.

I am pretty much bedridden, only getting up when I need to go to the bathroom (which is less than 10 feet away). Today I was walking to the bathroom and somehow managed to fall. I ended up twisting not only one, but both of my ankles. I hurt both of my ankles and hurt both of my feet.

I was already having a very bad pain day to start off with, and now I am having these incredible burning shooting pains into my ankles. I am not sure if I twisted or sprained my ankles, but wow... what a day.

Kitt 07-13-2010 04:57 PM

Quote:

Originally Posted by Sarah Mae (Post 675183)
I don't know about the rest of you, but my my toes are very very sensitive. The front half of my feet are numb, and that is where the nerve damage is. It feels like all 10 of my toes are broken, and even a slight touch, a sheet covering at night, or a slight breeze from a window or fan can send me over the edge and make me scream or cry out in pain. I walk on my heels and the side of my feet because I can't put any pressure on the front of my feet.

I am pretty much bedridden, only getting up when I need to go to the bathroom (which is less than 10 feet away). Today I was walking to the bathroom and somehow managed to fall. I ended up twisting not only one, but both of my ankles. I hurt both of my ankles and hurt both of my feet.

I was already having a very bad pain day to start off with, and now I am having these incredible burning shooting pains into my ankles. I am not sure if I twisted or sprained my ankles, but wow... what a day.

So sorry to hear about your fall. What a day is right. I hope you feel better soon. Take care.

dany 07-13-2010 10:32 PM

Did you have a test for small fiber PN?
 
There are only 2 tests that I've heard of for small fiber PN and not all Drs. are real aware of the one test, the skin-punch biopsy. You have the burning and as you say, symptoms of sfpn. I don't remember the other test, I think it's a sweat test or something like that, maybe someone else will post. Small fiber PN is when the tiny nerves in our skin are damaged.

I had the skin-punch and it's very easy on you to have done and Johns Hopkins will do the checking on your skin samples and results by mail. I can give you the details if you want. Just post me a private message here and I'll look for it. You would have your Dr. get the skin samples, I had 3 and you mail them to Johns Hopkins in Baltimore, MD. Or you may be close to one of the few places that does this test in the US. There may be around 10-12 now.

glenntaj 07-14-2010 06:36 AM

There are a few other tests--
 
--that can imply small-fiber disruption: there is quantitative sensory testing, in which an electrode that can assume various temperatures is used to determine one's sensitivity to hot and cold (those this relies on self-reporting), and there are also autonomic tests such as the sudomotor axon reflex (sweat) test. But skin biopsy is currently the most definitive.

Essential fatty acids are the type found in fish oil, flax, etc.--Omega 3's primarily (we tend to get not enough omega 3 and too much omega 6 in standard diets), and these are necessary for proper maintenance of the myelin sheathing of large nerve fibers.


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