Hi Joanna

Sorry I can't answer your question about whether NLD neuropathy is ganglionopathy but I can say that full body nerve damage can be from more than one cause. I have full body neuropathy - from my eyelids to between my toes and pretty much everywhere in-between.

Like Healthgirl, no-one has mentioned ganglionopathy to me (not that they've mentioned much at all). Mine is presumed to be auto-immune as I have another chronic auto-immune condition. Mine was also aggravated by the antibiotic Flagyl (Metrondiazole).

Thanks Cliffman for that useful link.

hi bluesfan, how is your NLD SFN? i also took metronidazole twice before symptom onset. My full body burning has subsided, but getting shooting pains in toes and hands, also throat is burning after fizzy drinks and seems brown sugar now.

My neuro is calling mine NLD SFN as DRG is difficult to examine.

I am really keen to know if there are other causes which give a NLD presentation other than Ganglionopathy.?

--such as celiac, are known for affecting parts of the body neurologically beyond the usual "stocking/glove" distiribution.

Also, neuropathies due to toxicity, such as from heavy metals, some chemotherapy drugs, and ciguatera poisoning, often have a more global distribution.

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.

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.

Thanks all for the replies and the helpful links!

Many of us have experiences wherein the neuro's themselves don't always know. I understand that there can be a number of causes. I read with celieac for example that the gluten causes antibodies that can attack the DRG and therfore that is ganglionopathy brought about by celiac. I dont know how they can know for sure which is under attack if not for the sophisticated MRI's which we dont have access to over here. I do fear that NLD presentation is due to DRG attack by a possible number of mechanisms. I am seeing neuro this Friday. He is a better one, thanks to Lou Lou's recommendation ;-). I will post back what his answer is. Fingers crossed he actually knows!

Bluesfan / Healthgirl, I hope you both are managing to lead some semblance of a normal life. It is so so hard dealing with this when no one else in the average population has a clue what you are on about!

Bluesfan, I have looked through messages to see if we have already messaged so not to repeat myself. I blame the gabapentin for that ;-). What is your other A.I and is it being treated?

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.

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