[DavidHC]

Thank you in advance.

http://jnnp.bmj.com/content/79/2/163.short

[en bloc]

Make note of the article number, title, etc and ask your doctor to obtain the full article. Certainly, he/she will get you a copy.

It would open the door for good conversation about ganglionopathy as well.

[stillHoping]

Originally Posted by DavidHC

Thank you in advance.

http://jnnp.bmj.com/content/79/2/163.short

I have it, I sent you a private message.

[glenntaj]

--considered for inclusion in this paper, though I didn't make the final cut; it was thought that while my acute neuropathic onset had definite characterisitcs of a dorsal root ganglion problem, and was limited to small fiber symptoms, my pattern was ascending from toes to hands to trunk and face (though this took only days) and even three months out, while skin biopsy did show dimunition of nerve fiber density at both calf and thigh, it was more prominent at calf, and so somewhat "length dependent".

Still, no cause was ever found--I remained stubbornly idiopathic. Russell Chin, one of the authors mentioned here, was my neurologist, and he and I did agree that I showed evidence of autoimmune molecular mimicry that may have preferentially involved dorsal root ganglia. My situation also resembles the entity sometimes referred to as ASFN in some papers--acute onset small fiber neuropathy--which in analogous to a small sensory fiber Guillain Barre. It's certainly possible for there to be mixed characteristics; these designatory entities are merely the researchers' best approximations at describing syndromes that may not be as distinct as they might like them to be.

[DavidHC]

Thank you all, and thank you StillHoping. I sent you a message. I usually can download them myself, but for some reason this particular journal wasn't available via my institution.

En Bloc, we actually spoke about this issue last time, but we had so much to discuss that we had to hold off until next time for the ganglionopathy vs neuropathy discussion. He's an academic, as am I, so he quite enjoys getting into things with me and having a technical discussion. I'm fortunate that I came across him completely by chance, because the last two neuros were severely incompetent both intellectually and in respect of their technical skills.

Glenn, I find your comment and situation/presentation quite fascinating. I'm also curious how you're doing now, so how it progressed or improved and how long it took. I posted my story earlier, a few days back, but it seems that mine may be closest to yours. Thinking back after the fact, mine began with sores on the bottom of my toes, so feet were hit first no doubt, then several months top a year later with dry skin on my hands, and some face numbness. When it did really hit, it began in the feet and then hit the trunk and face/head. This took about 3-4 months, so from feet to trunk and face. Would I then not fall under the non-length dependent category? When they did my biopsy, they didn't do two, so just my calf and it came back quite low in density but no noticeable morphological changes.

I looked up GB syndrome and now I'm wondering whether I have that, or at least what you have or something akin to it where it mimics it and falls under ASFN. I've seen quite a bit of improvement from the summertime and spring when it began, but every now and then I get some tingling or numbness in a new place, say my lips and tongue recently, which weren't there before, even though I had face and head symptoms going back to the summer. Perhaps that's not a new region or expansion or progression. I don't know. The improvement came by putting drinking aside completely, as well as anything that doesn't fit into a keto-paleo diet, and also exercising, no meds, so I can't say what has helped on that front and see what that might signal.

I'm curious about all this because we're at the stage of trying to figure out what the cause of mine is and time is passing us by. Possible suspect are autoimmune, but the ANA came back neg twice. I have severe dry mouth and itchy eyes (though they're not dry), so Sjogren's is possible he thinks. Amyloidosis is another possibility. But we really don't know.

Anyway, I'm rambling now. I do think you're dead on with what you say at the end of your comment. Categories are almost always imprecise and in this case very much so, since almost everyone is unique in presentation and the causes are so diverse. Until a few years ago, they didn't even know what this was. They're still very much in the dark, and though I'm doing my research now into the ganglionopathy, and don't know enough, I'm wondering if the inference that it's not neuropathy but ganglionopathy, so cell death, is a hypothesis, not a fact.

Thanks!

[DavidHC]

BTW, Glenn, I didn't see that you had posted on 'My Story' thread, apologies. I have to get to that. And I should say celiac was thought a possibility, but since I'm off gluten and don't intend to back on for anything, they can't do the blood test or the biopsy, as both will come back negative. In fact, he did the blood test a few weeks back, and I'm sure it came back neg, since I didn't receive a call. In fact, he knew it would but just ordered it for the hell of it.