--for peripheral neuropathy tell it, I'm a rather rare/interesting case. (Couple of Hopkins researchers think so, too.)

My presentation was atypical--most analagous to a small-fiber sensroy Guillain Barre. On April 12, 2003, I felt a small tingling in the bottom of my right foot, between the fourth and fifth toes. In four hours, it had gone from that to a searing, burning pain all over my right foot. In three days, it was in my hands, and by ten days, when I finally got in to see a neurologist (the first of many), it had progressed to myentire body--a searing, burning, touch sensitive pain that can only be analogized by imagining a body wide sunburn that someone had rubbed with steel wool. Needless to say, I had not been sleeping, working, eating--clothes, sheets, all was agony. Fortunately, Neurontin was prescribed, and I began to gain some relief from the first dose, though it was weeks before the dose was increased enough for me to be functional.

In teh meantime, I wa subjeted to a HUGE battery of tests--what doctors were looking for was MS (forty-three year old guy with sudden body-wide sensory parasthesia/dysesthesia/allodynia--that was the suspicion). But all tests were normal/negative. I was able by then to do research into the possibilities, and began to suspect that this was a peripheral, not central, nervous system problem, probably of the small fibers, but the local neuros were clueless about this possibility, and I went to several, at each trying to drive the test protocol further. I finally got to the Cornell Center, where I finally got two test clues--the center's own ganglioside agglutinin test, a test of gross autoantibody activity, showed a slight positive, and a skin biopsy to look at the small, unmyelinated nerve fibers (the ones that subsume the senations of pain and temperature) indicated severe damage and 2% of normal fiber density. I was happy at least to have some evidence this was not "all in my head"--and, in fact, the symptoms were consistent with the damage pattern. (I'd had quite normal nerve conduction studies and EMG's, but those can only measure gross damage to larger fibers.) Problem was, while my nerve damge wa now documented, there was no indiction of how/why it had happened. Best available theory, still, is that I had some sort of post-infectious autoimmune molecular mimicry process over days/weeks.

The good news about this is that it seems to have been monophasic. I have been followed almost four years now, and subsequent skin biopsies have shown I am slowly regaining some nerve fiber density (I was up to 11% on the last one--it's unlikely I'll ever get near average, though). My symptoms are somewhat reduced--especially over the last 18 months, they seem to be gradually easing, though I am still prone to "flares" and intermittent "flashes". I've actually cut down (gradually) my Neurontin dosage from 2400mg/day to 1600mg/day over the last year.

Since the ealry days of this, thansk to many of the people I've met on boards such as that of the Neuropathy Association and Braintalk, many of whom have migrated here, I have taken significant B-vitmains, seperate methylcobalamin B12, alpha-lipoic (and then R-lipoic) acid, cosndierabel fish oil, magnesium chelate, and additional zinc. I also tried acetyl-l-carnitine, though I did not notice any positive/negative effects from that. I find that the B-vitamins have helped my energy and probably the shooting pain to a certain extent. I have used them and the lipoic primarily to reduce oxidative stress in the body. Moreover, I have gone on a gluten-free diet (with occassional slips) and tried to eat a diabetic Zone type of diet; though I have never been measured with serologic gluten sensitivity or impaired glucose toleracne, I am insulin resistant and, like many others have reported, have sometimes noticed neural symptom upticks after heavy sugar or gouten intake.

My condition has left me very prone--much more prone than normals--to compressive neural damage. I am currently fighting a C6/C7 right radiculopathy that has been helped somewhat by traction, and a left elbow ulnar slight numbness that I tend to cause/exacerbate by bad sleeping and computer positions (I'm making a big effort not to lean on it as I type right now).

I have been tested for autonomic effects--many people with small fiber syndromes do have these, though they are often sublinical--but my systems seem to be functioning within normal parameters. I may not be a good guide in this area, though--a long history of running left me with a slower than normal heartbeat (though I haven't run in a long time, I do walk and swim a lot, and it's still slower than most guys my age/size report--I have to explain this to doctors) AND I have a long history of biofeedback training (well before the neuropathy) and have some degree of control over my blood pressure , skin temperature, and heart rate. I suppose the fact that I still can control those to a certain extent means my autonomic nerves are not greatly damaged.