Ah that's really interesting, thanks glenn. If it is toxic, that suggests it isn't DRG neccessarily, I think anyway. I can imagine that would be the case with chemo toxicitiy.

Thanks cliffman. I didn't realise ganglionopathy can take various forms in itself. This is a good article. :-)

The dorsal roots can be damaged by many things;

http://www.ncbi.nlm.nih.gov/pubmed/21097829

Shingles is one virus that has been shown to do this.

This link is slow to load for me, but does go into more
detail:
https://books.google.com/books?id=VI...anglia&f=false

Given today's awful news about the Zika virus, I expect to see more posters showing up on our PN forum.

Hi LouLou

The neurologist I saw diagnosed my neuropathy simply as "polyneuropathy" - which I think is a fairly generic term. Unfortunately I'm in a country with a public health system so I've only had the basic NCV & EMG tests (both negative) - further testing, eg punch biopsy, hasn't been offered - so the SFN isn't confirmed and as for it being NLD or not I really don't know.

But your question got me wondering and I did a little searching and here's a couple of links which mention NLD SFN which may clarify things.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/
(Paragraph 2 under "Definition of Small Fibre Neuropathy")

http://www.ncbi.nlm.nih.gov/pubmed/20433606
(This is just a brief abstract but it was a study about the difference between non-length dependent and distal SFN)

At a rough interpretation of the figures it seems about 5% of those with SFN will have the NLD type.

At the moment mine is a deep bone pain in some places with burning feet constantly - I have permanent numbness in my outer left foot & hand and muscle atrophy in my left hand. Taking a shower will cause my skin to sting for about 3hrs. I have a myriad of other symptoms which may or may not be due to the neuropathy.

Hi Joanna

My AI condition is Primary Addison's Disease (Adrenal Insufficiency) and while there is no cure for it, it is being managed (maintenance dose steroids). The steroids do provide a small analgesic effect sometimes but I'm not taking high enough doses to take away the neuropathy pain.

I have read that neuropathy can be secondary to a number of AI conditions and that even if the primary condition is managed the Neuropathy may not necessarily improve. I think this also happens in many diabetes cases as well.

No, they did not offer IVIG, but my local neurologist thinks it would help me. He tried to get it for me but my insurance needs more proof of cause. My ANA and borderline sjogrens wasn't enough.

I just realized one of my tests called gangioside (asialo-GM1) came out at 56 with the normal range being 0-50. I asked my neuro who ordered the test about it and he said it doesn't matter.

As a newbie with this awful disorder, I don't yet understand NLD or ganglionopathy. I did find this though, and it's really useful for beginners (though I have no idea if it answers your question)

http://www.google.com/url?sa=t&rct=j...5SjEvzgppQUB_Q

Thanks ShaggyChic

Very informative article - now if we could only get our neuro's to read it - then we might get some useful diagnosis or treatment.

I was diagnosed with DRG....not that it mattered (treatment-wise)! Cliffman and Heathgirl....I also had a completely unresponsive "top doc" at Columbia, but it seems I found a really dedicated and kind neuro at Weill Cornell...thanks to Glenntag! Please PM him or me if you'd like the name.

Healthgirl...I just wish for you to know I'm hoping for the best for you and your children. I hope Kiwi's insights were reassuring.

Sylvie