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Originally Posted by bluesfan
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. |
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?