Is non length dependant SFN always a ganglionopathy?
 

Hi everyone,

I have trawled through posts to find answers to this. Apologies to those who may have already had this discussion but if anyone is informative on this subject, it would be great to hear. I find the internet does not have much info on sensory ganglionopathies.

Does anyone know whether a NLD neuropathy means without question that it is a ganglionopathy? I don't know how else and by what mechanism one would suffer full body nerve damage. I have it everywhere. It started in thighs and is full on in my legs, buttocks, arms and now face and the teeth are getting it badly at the moment.

I would love to hope it was not a ganglionopathy as chances of improvement I know are pretty limited. As many of you understand, the desire to know exactly what is happening is overwhelming.

Thanks all :grouphug:

Neither of my doctors at Columbia told me my nld sfn is ganglionopathy. Then again they didn't tell me much of anything besides that I have nerve damage all over maybe its autoimmune and here are what drugs you can take.

I would too like to know if NLD neuropathy means ganglionopathy. Very good question raised by Joanna. Thanks

Not sure if this is helpful.
http://www.medlink.com/article/sensory_ganglionitis

Hi Healthgirl,

I waited several months to see one of the top doctors at Columbia. I didn't get any answers either. If yours is possibly autoimmune did they offer you IVIG as a possible treatment?

It seems to be extremely hard to get any accurate answers as to why it spreads so rapidly.

Cliffman

I was under the impression that NLD is not necessarily a ganglionopathy, but a ganglionopathy is generally NLD.

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. :D

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.?

A number of autoimmune conditions--
 

--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.

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?

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.

SMall fiber grand rounds
 

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 :rolleyes: - 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