I was struck with an acute-onset body-wide burning painful neuropathy in April of 2003; while it did start in my right foot, it climbed into my hands within three days and was all over my body, toe to crown, in ten days.

One can look up more posts I've made if one is interested in a lot of the details of going through various docs and neuros who had no idea what was going on with me, how I had more than a hundred pages of normal or negative tests, how I was accused of faking/malingering, and how it took me 3+ months until I wound up at the Cornell-Weill Center for Peripheral Neuropathy, at which a skin biopsy finally provided evidence of small-fiber damage and vastly reduced intraepidermal nerve fiber density (2% of normal).

My skin biopsy results did not show the usual length dependent gradient--I showed considerable de-enervation at ankle, thigh, and elbow. This was certainly compatible with my symptoms, which were all sensory and did not involve any appreciable numbness, but excrutiating burning pain (I was fortunate Neurontin controlled it to a great extent). No explanation was ever found for my situation, though a post-infectious autoimmune molecular mimicry process was suspected. And, yes, one avenue of exploration led us to the idea that this was a ganglionopathy, as described by Dr. Abhay Mogehkar at Johns Hopkins--a selective attack on the sensory dorsal root ganglia from which the small fibers that subsume pain sensations arise. I actually corresponded with Dr. Mogehkar, who said he'd seen about a dozen cases like this, and that while such an acute symptom pattern was suggestive of ganglionopathy, there was no direct way to tell, as MRI technololgy was insufficiently precise, biopsy that close to the spine was not a good idea, and confirmation awaited my autopsy (a bit of neurologist humor there).

There's not a lot of research on this type of syndrome. The few reports seem to indicate that such an occurrence is monophasic, not progressive, at least after the first few months, and that regeneration depends on the extent to which the ganglia are damaged. Totally destroyed ganglia cannot regenerate, but if some nuclei are damaged yet others spared, it is possible to get slow, partial recovery over years, with some symptom reduction, as undamaged nuclei may sprout new axonal connections to take over for those that are lost. This regrowth process is in itself often painful, and produces a lot of parasthetic "sensation weirdness" until the brain learns to interpret the re-wiring. (In this sense, the recovery process is analagous to that which may occur due to incomplete damage due to moderate B12 deficiency.)

I do seem to have experienced a considerable degree of recovery and symptom reduction, to the extent that I'm bothered more by my C6/C7 right radiculopathy day to day at this point. I am still prone to flares, though, and I'm highly sensitive to compressive forces, which cause far more neuropathic symptomology than "normals" would get.

Though I never had a positive gluten-sensitive serology, I did go on a gluten-free diet and do believe this helped. Of course, I also take major supplements (methylcobalamin B12, fish oil, R-lipoic acid, other B-vitamins, magnesium citrate) and try to eat a Zone type diet with very little processed sugar or other carbohydrates. They key is not only to optimize the conditons for nerve regeneration, but to avoid known nerve toxins and excitatory irritants (and sugar and gluten are certainly among those). I also have never smoked, or drank alcohol, which hopefully contributed to the optimization.

I empathize with your situation, especially with the uncertainty. It is certainly hard to tell, if one does have ganglion damage, how far it extends and what capacity one has for healing. All I can say is to try to mitigate symptoms and provide as optimal an environment for re-growth as possible (I certainly don't agree with those doctors who believe that the situation is inevitably degenerative).