Having just read DavidHCs post I keep coming back to ganglionopathy myself. I had sfn start in my thighs and buttocks and now it's everywhere and sporadically in my face, tongue and now to add to the joy, I have it in more intimate regions . Does anyone know if ganglionopathy can affect larger motor nerves and therefore become more than just sensory?
I have conducted months of research into my sfn but am in a gabapentin enduced stupor more often than not these days, I keep reading articles over and over and finding no answers. I do try and find the answers to these questions but its becoming harder.
I won't continue to hog the boards tonight, last post for now! :-)

I think I read somewhere that the dorsol root ganglia lack motor neurons, but I'll have to check that. Perhaps someone else can speak more authoritatively to this. Of course, I believe someone with pure SFN can end up having larger nerve involvement and so motor neurons.

One thing I was thinking here too is whether someone with ganglionopathy can still experience regeneration. Some posters have hinted at this (Brian said so explicitly, but just in passing: http://neurotalk.psychcentral.com/thread229883-2.html; and En Bloc seems to be experiencing it). Can anyone weigh in on this, ideally with some studies? I'll look into this myself too.

I have some links on the subforum about this, ganglionopathy.

Repair has been found recently to be genetically driven with a small subset of people who lack the DNA directions to repair damage there.

The result has been suggested that only stem cell therapies could work.

The dorsal roots get damaged by toxins, and viruses (ex: Shingles from Herpes Zoster), and trauma. Most people can repair this with adequate attention to nutrients...but those lacking the genes to make the growth factors, remain damaged.

So stem cells are being investigated for this.

Thank you, MrsD. I'll do a search. I'm interested in this small category of people who lack the DNA direction. But in general this sounds like good news.

Joanna,

I know that you can not get IVIG, but could you get someone to prescribe Low Dose Naltrexone for you? It might be worth a try and it only cost about a dollar a day.

http://www.jillcarnahan.com/2015/12/...ever-heard-of/

There is a 25 minute video interview/slideshow at the end of the article, if you are interested.

Hi, Madison... I have heard of LDN in several different forums for overlapping issues I have (chronic virus, fibro, neuropathy). I'm wondering how you have succeeded getting a RX for it, when it doesn't seem to be FDA approved in the US for chronic pain conditions? Did you bring the suggestion to your doctor and he approved of it or was it his/her suggestion to you? Also, it doesn't seem to be compounded in the low dosage here in the US, so how do you get it dispensed? I'm going back to pain management in January, and I'd like to go as informed and prepared as possible. I found a PubMed review on LDN that I think I'll bring with me, but it all seems very experimental at this point. I've tried so many things; so many side effects. Currently, I'm on gabapentin and nortriptyline, too, but low doses of both. Thanks!

Yes, the input from the peripheral nervous system to the central nervous system goes through the dorsal root ganglion (DRG) to the posterior horn of the vertebras. The bodies of the peripheral sensory neurons are located in the DRG.
The autonomic and motor pathways are located more forward in the lateral and anterior horn of the vertebras, they exists from separate locations (more forward) in the spinal column and doesn’t goes through the DRG.