Ganglionopathy - again
 

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 :confused:. 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. :)

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.

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.

Thank you for this link. I listening to the entire thing. Quite interesting. I'll see how things develop, but this is the first pharmaceutical drug that I'm willing to consider.

MrsD, I've been using the search function and still haven't found anything that speaks directly to the things you say about gangliopathy, but I'll keep looking.

Try these:

http://neurotalk.psychcentral.com/sh...ht=dorsal+root

http://neurotalk.psychcentral.com/sh...ht=dorsal+root

http://www.sciencedaily.com/releases...0608102944.htm

Great. Thank you so much.

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!

Naltrexone is available in other doses in the US.

https://en.wikipedia.org/wiki/Naltrexone

I believe you have your RX written for whatever low milligrams you have your doctor start you up on, and take that to a compounding pharmacy and they divide up the tablet for you into smaller doses. Some websites have directions for the patient to do this themselves.

Our MS forum here has a pharmacy that does this for them, and mails the RX out to the patient when it is ordered.
http://neurotalk.psychcentral.com/thread71392.html

Ganglionopathy - again
 

The new clinic that I'm seeing prescribed it without me asking. It is prescribed off label. It is FDA approved at higher doses, but will likely never approve it at lower doses; there is no money to be made for pharma, so they won't invest the money for low dose approval. This drug had a low side effect profile. I personally take 2.5 mg each night and have had zero side effects.

I get my LDN compounded at a pharmacy here in the city where I live in. It cost me about a dollar a day and they ship it to my house, Pain doctors are starting to use LDN. Pradeep Chopra is a well known pain doctor who has published a small case study that highlights success with RSD patients on LDN.

There is a good paper out there that explains the 2 mechanisms for this drug. Let me know if you can't find it because I probably have it tucked away somewhere on one of my computers.


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Hi Madisongirl, thankyou for the info on LDN. I did acquire some here in the UK but felt unsure about it as I didn't know what side effects I may suffer. I only took it a week and threw it. I have become very skeptical of everything now I have come a bit further down the road of illness and trying to find something to help. I think I will look through some more online info again and really consider giving it a good try. Do you feel it has helped you? Hole it has to some extent

LDN has a low side effect profile. Some people might get insomnia at first and others experience vivid dreams. I did not have any issues with it. Plus, I'm so doped up on gabapentin that I never remember my dreams or have problems sleeping.

I started LDN and antibiotics in the middle of October. I felt improvements after 2 weeks of starting those drugs. I thought it was due to the LDN, however the nurse said it likely due to the antibiotics. She said it takes a little longer for LDN to work for neuropathic pain - so if you try it again, give it several months to work.

Today, I've felt the best that I've ever felt since initially getting sick. I'm going to continue on with the LDN...