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Old 12-14-2015, 10:16 PM #11
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Quote:
Originally Posted by DavidHC View Post
Okay, good, so I'm not recalling this incorrectly. I have to find this now. So the onset was acute or subacute, it wasn't that it dissipated quickly, meaning that the acute or subacute onset and it being chronic/long standing needn't be mutually exclusive? I'll look for it. Just giving myself and other of us some hope. It has been just over half a year for me.
Usually acute or sub-acute onset means it comes on over a period of weeks to months, where the worst symptoms hit their peak. Then, at that point, you are stuck dealing with the pain of the damage and it's a long game to see how much are able to heal. Some of the neuromucular medical websites say that this type of presentation of SFN will get some type of partial recovery, depending on if the cell bodies in your spine were damaged or not.
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Old 12-14-2015, 10:55 PM #12
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Hi all, [ and hello to all of my old friends ] it has been some time since posting here but seen this post and thought I should answer it.
All peripheral nerves do have the ability to regenerate as long as the nerve cell is not dead but even then they can re sprout, this is only possible once what ever has been causing the damage has stopped.

I had mostly small fibre damage and some large nerve damage as well, the cause was being in a prediabetic state and low in B12as well.

I had burning feet and up the legs as well, the electric jabs and all that jazz, so once diagnosed I changed my diet to get the sugars down to near normal readings but it still took about 3 years to heal completely and not needing any pain killers at all.
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Old 12-15-2015, 01:38 AM #13
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Very interesting to hear everyone's thoughts on this. I wonder what the future holds for treatment. In the future, will they have better more effective treatment? Or will they just keep throwing these weak/sedative drugs on everyone?
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Old 12-15-2015, 09:02 AM #14
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Default AS Brian points out--

--it is certainly possible for nerves to regenerate.

The key, at least at our present state of knowledge, is if the cell bodies remain intact. If damage is limited mostly to the fiber, or axon, and the cell body is still capable of performing the metabolic functions of a living cell (e.g., it's nucleus is intact), then if the conditions that are causing the damage are removed the cell will regrow fibers, although this is slow--that 1mm/day figure is often cited as being under OPTIMAL conditions--and often the fibers regrow in somewhat different patterns than previously, given rise to all sorts of peculiar sensations as the fibers try to reach their final targets (often enough weirdity occurs for people to think their symptoms are flaring or actually becoming worse for a while).

There is, of course, a lot of variability in the natural history of neuropathy. The most consistent correlation for those who get recovery, though often the recovery is patchy or incomplete, is timing of onset, rather than actual etiology. Those whose onsets are acute or subacute--the time from no symptoms to highest symptoms measured in weeks or even days (I among them) seem to have the best chance at recovery, whether the cause is metabolic, autoimmune, toxic, or even unknown. Why this is the case is a subject for speculation, though it is thought a rapid onset represents a sudden, very different body state that, if it can be arrested, can "burn out" and have its effects removed more over time. It's also likely that longer onset situations result in more chronically elevated levels of stress hormones and other changes that inhibit healing more than a sudden "trauma" would.

Yes, I have gotten considerable recovery--my onset was HOURS (feeling this dysethetic burning actually crawling up my body was indescribably weird)--my symptoms were decently controlled with gabapentin once I ramped up to a 2400mg/day spaced dose and seemed to peak in the first three months, with VERY gradual reductions over the next two-three years. And yes, serial skin biopsies documented nerve regeneration and the sampled fibers over time looked at by electron microscopy were a lot less swollen and disturbed.
In about three-four years I was about 90% back to baseline, symptomologically speaking. I still get some infrequent flaring, and I am very prone to compressive effects that start up over seemingly nothing, hang around days to weeks, and then vanish as quickly as they came--I wonder if these represent nerves in different pathways than before and their vulnerability. But I think I've gotten about as full a recovery as it is likely possible to have, to the extent that what remains is a nuisance--sometimes more than others, especially when my pudendal area flares--but not significantly getting in the way of normal activities most of the time.

Of course, I keep up the B12, magnesium, R-lipoic, fish oil and general B-vitamin supplementation; I do think all that helped and while I may not need as much of it now, I'm not messing with that which seems to have worked. (And by trial and error, I do get more cramping, for example, if I experiment with several days off magnesium.) I also exercise pretty fanatically now; obviously I'm addicted to the endorphins. I do not drink at all and I avoid gluten and as much sugar as I can. I am only hoping that I can maintain this level as I age.
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Old 12-15-2015, 01:12 PM #15
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Thank you for this. I need to hear such stories. I'm so glad you've gotten so much relief. I am doing all that I can to attain remission, and I hope I do. The strangest thing about my situation is that I have very little pain, but lots of itching, tingling, electric current feelings, somewhat less numbness, cramping and electric shock feelings. I did have much more pain when it all was happening, including lots of muscle and joint soreness. The last couple of weeks I've had some burning, but just in one place where I burned myself recently. The intense, non-stop burning of feet and hands and the like, I've not experienced for the most part, or very minimally. The most constant symptom is tingling and somewhat less numbness.

Quote:
Originally Posted by glenntaj View Post
--it is certainly possible for nerves to regenerate.

The key, at least at our present state of knowledge, is if the cell bodies remain intact. If damage is limited mostly to the fiber, or axon, and the cell body is still capable of performing the metabolic functions of a living cell (e.g., it's nucleus is intact), then if the conditions that are causing the damage are removed the cell will regrow fibers, although this is slow--that 1mm/day figure is often cited as being under OPTIMAL conditions--and often the fibers regrow in somewhat different patterns than previously, given rise to all sorts of peculiar sensations as the fibers try to reach their final targets (often enough weirdity occurs for people to think their symptoms are flaring or actually becoming worse for a while).

There is, of course, a lot of variability in the natural history of neuropathy. The most consistent correlation for those who get recovery, though often the recovery is patchy or incomplete, is timing of onset, rather than actual etiology. Those whose onsets are acute or subacute--the time from no symptoms to highest symptoms measured in weeks or even days (I among them) seem to have the best chance at recovery, whether the cause is metabolic, autoimmune, toxic, or even unknown. Why this is the case is a subject for speculation, though it is thought a rapid onset represents a sudden, very different body state that, if it can be arrested, can "burn out" and have its effects removed more over time. It's also likely that longer onset situations result in more chronically elevated levels of stress hormones and other changes that inhibit healing more than a sudden "trauma" would.

Yes, I have gotten considerable recovery--my onset was HOURS (feeling this dysethetic burning actually crawling up my body was indescribably weird)--my symptoms were decently controlled with gabapentin once I ramped up to a 2400mg/day spaced dose and seemed to peak in the first three months, with VERY gradual reductions over the next two-three years. And yes, serial skin biopsies documented nerve regeneration and the sampled fibers over time looked at by electron microscopy were a lot less swollen and disturbed.
In about three-four years I was about 90% back to baseline, symptomologically speaking. I still get some infrequent flaring, and I am very prone to compressive effects that start up over seemingly nothing, hang around days to weeks, and then vanish as quickly as they came--I wonder if these represent nerves in different pathways than before and their vulnerability. But I think I've gotten about as full a recovery as it is likely possible to have, to the extent that what remains is a nuisance--sometimes more than others, especially when my pudendal area flares--but not significantly getting in the way of normal activities most of the time.

Of course, I keep up the B12, magnesium, R-lipoic, fish oil and general B-vitamin supplementation; I do think all that helped and while I may not need as much of it now, I'm not messing with that which seems to have worked. (And by trial and error, I do get more cramping, for example, if I experiment with several days off magnesium.) I also exercise pretty fanatically now; obviously I'm addicted to the endorphins. I do not drink at all and I avoid gluten and as much sugar as I can. I am only hoping that I can maintain this level as I age.
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Old 12-15-2015, 01:13 PM #16
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Thanks.

Categories are funny/tricky things. I'm not sure if I fit into this category, but I think I do.

Quote:
Originally Posted by madisongrrl View Post
Usually acute or sub-acute onset means it comes on over a period of weeks to months, where the worst symptoms hit their peak. Then, at that point, you are stuck dealing with the pain of the damage and it's a long game to see how much are able to heal. Some of the neuromucular medical websites say that this type of presentation of SFN will get some type of partial recovery, depending on if the cell bodies in your spine were damaged or not.
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Old 12-15-2015, 09:42 PM #17
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Quote:
Originally Posted by glenntaj View Post
--it is certainly possible for nerves to regenerate.

The key, at least at our present state of knowledge, is if the cell bodies remain intact. If damage is limited mostly to the fiber, or axon, and the cell body is still capable of performing the metabolic functions of a living cell (e.g., it's nucleus is intact), then if the conditions that are causing the damage are removed the cell will regrow fibers, although this is slow--that 1mm/day figure is often cited as being under OPTIMAL conditions--and often the fibers regrow in somewhat different patterns than previously, given rise to all sorts of peculiar sensations as the fibers try to reach their final targets (often enough weirdity occurs for people to think their symptoms are flaring or actually becoming worse for a while).

There is, of course, a lot of variability in the natural history of neuropathy. The most consistent correlation for those who get recovery, though often the recovery is patchy or incomplete, is timing of onset, rather than actual etiology. Those whose onsets are acute or subacute--the time from no symptoms to highest symptoms measured in weeks or even days (I among them) seem to have the best chance at recovery, whether the cause is metabolic, autoimmune, toxic, or even unknown. Why this is the case is a subject for speculation, though it is thought a rapid onset represents a sudden, very different body state that, if it can be arrested, can "burn out" and have its effects removed more over time. It's also likely that longer onset situations result in more chronically elevated levels of stress hormones and other changes that inhibit healing more than a sudden "trauma" would.

Yes, I have gotten considerable recovery--my onset was HOURS (feeling this dysethetic burning actually crawling up my body was indescribably weird)--my symptoms were decently controlled with gabapentin once I ramped up to a 2400mg/day spaced dose and seemed to peak in the first three months, with VERY gradual reductions over the next two-three years. And yes, serial skin biopsies documented nerve regeneration and the sampled fibers over time looked at by electron microscopy were a lot less swollen and disturbed.
In about three-four years I was about 90% back to baseline, symptomologically speaking. I still get some infrequent flaring, and I am very prone to compressive effects that start up over seemingly nothing, hang around days to weeks, and then vanish as quickly as they came--I wonder if these represent nerves in different pathways than before and their vulnerability. But I think I've gotten about as full a recovery as it is likely possible to have, to the extent that what remains is a nuisance--sometimes more than others, especially when my pudendal area flares--but not significantly getting in the way of normal activities most of the time.

Of course, I keep up the B12, magnesium, R-lipoic, fish oil and general B-vitamin supplementation; I do think all that helped and while I may not need as much of it now, I'm not messing with that which seems to have worked. (And by trial and error, I do get more cramping, for example, if I experiment with several days off magnesium.) I also exercise pretty fanatically now; obviously I'm addicted to the endorphins. I do not drink at all and I avoid gluten and as much sugar as I can. I am only hoping that I can maintain this level as I age.
Well said, but what do you mean when you say "optimal conditions?" Also, my pn came on acute/suddenly as well.
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