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

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.

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.

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?