[Blue7]

I keep hearing conflicting stories. Some people say it heals, some people say it's permanent. Then I heard that it does heal, but the nerve endings grow differently and you will still be in pain. Then I heard that small fiber nerves grow back at 1mm a day. If you have scar tissue they won't grow right. Even the experts are completely clueless? This is something that people study all their life and have absolutely no clue? Maybe the medical world should just place this under "permanent disability" and move on.

It's been years and years with no clues and no advances, smh. Even people with H.I.V have a better quality of life now. I just don't understand it. Is it better to just lose your limbs completely so you won't feel anything? This just seems like the worst thing in the world to have. It's almost like having a life threatening disease is better because there is better treatment now a day's. Nobody really cares about neuropathy when it comes to science and medicine. Sad.

[Patrick Winter]

Originally Posted by Blue7

I keep hearing conflicting stories. Some people say it heals, some people say it's permanent. Then I heard that it does heal, but the nerve endings grow differently and you will still be in pain. Then I heard that small fiber nerves grow back at 1mm a day. If you have scar tissue they won't grow right. Even the experts are completely clueless? This is something that people study all their life and have absolutely no clue? Maybe the medical world should just place this under "permanent disability" and move on.

It's been years and years with no clues and no advances, smh. Even people with H.I.V have a better quality of life now. I just don't understand it. Is it better to just lose your limbs completely so you won't feel anything? This just seems like the worst thing in the world to have. It's almost like having a life threatening disease is better because there is better treatment now a day's. Nobody really cares about neuropathy when it comes to science and medicine. Sad.

Honestly I think they don't know. SFN (specifically) is a relatively new classification. They've just given it a name when years ago it was fibromyalgia, dysesthesia or in general - peripheral neuropathy.

i have a hard time believing it heals at 1mm a day. I'd be cured by now. Honestly, i have never heard of someone being cured of it. Reduction in symptoms, less pain, etc. but never a complete return to normalcy. I would be eager for someone to prove me I am wrong on that...

[madisongrrl]

Originally Posted by Patrick Winter

i have a hard time believing it heals at 1mm a day. I'd be cured by now. Honestly, i have never heard of someone being cured of it. Reduction in symptoms, less pain, etc. but never a complete return to normalcy. I would be eager for someone to prove me I am wrong on that...

Glenn who is a long time poster on these forums is probably one of the better examples of people getting better.

[DavidHC]

I recall reading a study that noted '2 patients experienced spontaneous remission'. It was a small study, so that's decent. I'll post a link to it, if I come across it again. I'll see if I can find it.

[Patrick Winter]

Originally Posted by madisongrrl

Glenn who is a long time poster on these forums is probably one of the better examples of people getting better.

Completely Cured?

[DavidHC]

There's this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2442424/

Not the one I was thinking about.

[Cliffman]

Originally Posted by Blue7

I keep hearing conflicting stories. Some people say it heals, some people say it's permanent. Then I heard that it does heal, but the nerve endings grow differently and you will still be in pain. Then I heard that small fiber nerves grow back at 1mm a day. If you have scar tissue they won't grow right. Even the experts are completely clueless? This is something that people study all their life and have absolutely no clue? Maybe the medical world should just place this under "permanent disability" and move on.

It's been years and years with no clues and no advances, smh. Even people with H.I.V have a better quality of life now. I just don't understand it. Is it better to just lose your limbs completely so you won't feel anything? This just seems like the worst thing in the world to have. It's almost like having a life threatening disease is better because there is better treatment now a day's. Nobody really cares about neuropathy when it comes to science and medicine. Sad.

I can understand dealing with this for a while but I can't get past the "never can be cured" part. Sorry but It depresses me to no end. What is also maddening is not knowing the cause.

Cliffman

[madisongrrl]

Originally Posted by Patrick Winter

Completely Cured?

Glenn usually posts in the mornings, so perhaps he will see this and respond. Or you can search for posts under his name.

He had an extreme case of acute onset burning that spread over his body with no cause that was found. His symptoms slowly went away to the point where he no longer takes gabapentin. His subsequent skin biopsies also showed improvement.

There have been a few others on different message boards that had neuropathy symptoms go into remission. I'm in a few Neuropathy, Lyme and LDN groups so it's interesting to listen to their stores. A women with SFN and full body burning had her symptoms go away when thyroid problems were corrected.

[madisongrrl]

Originally Posted by DavidHC

I recall reading a study that noted '2 patients experienced spontaneous remission'. It was a small study, so that's decent. I'll post a link to it, if I come across it again. I'll see if I can find it.

I've read that study and probably have it somewhere. I think they had an acute or sub-acute onset.

[DavidHC]

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.

Originally Posted by madisongrrl

I've read that study and probably have it somewhere. I think they had an acute or sub-acute onset.