Like many people, I latched on to Neurotalk during the rather extended hiatus of Braintalk. I'd been a very active member there, and at other boards, for quite some time and welcomed the chance to continue relationships with many that I had met there and to make new ones.
My own particular neurological problems are fairly well known--I'm a relatively famous case study in neuropathy circles, and get interviewed on the subject fairly often (I'm a good quote), but the quick summary is that on April 12, 2003, without any warning, I felt a small tingling on the bottom of my right foot that progressed to searing, burning nerve pain over the whole foot in the course of four hours. In three days it was suddenly in my hands; by day ten, when I finally got in to see a neurologist, it was all over my body. I had never felt pain of this kinds EVER before--a searing, burning, tingling nerve pain that kept me from sleeping, eating, walking my dog, wearing clothes, touching bedsheets . . .While the initial neuro testing revealed nothing amiss, I was given Neurontin, which thankfully started to knock the symptoms down somewhat--it would be weeks before I could titrate the dosage upward enough to function somewhat haltingly, but at least I could start to sleep and eat again. A six-day stint in hospital for an enormous round of testing--when a 43-year-old guy has a sudden onset of body-wide neural pain and no obvious toxic exposure, multiple sclerosis is generally the first diagnosis suspected--revealed nothing; x-rays, spinal tap, MRI's of brain and spine, innumerable blood and urine tests, were all just FINE. I was discharged with no diagnosis and no suggestions for how to get any; the medical staff was baffled, inasmuch as nerve conduction studies were among the normal tests.
Fortunately, my symptoms were reduced enough that I could now sit at the computer at least some time and I started to research what this whole thing could possibly be. Though none of the local neuors were familiar with the idea, I decided that I must have some form of small-fiber syndrome (the small, unmyelinated fibers subsume the sensatioons of pain and temperature, and their function is not accesible through standard nerve conduction study) and I sought out those centers which could continue a far more extensive and focused protocol. Though it took me two months, I finally got an appointment at the Cornell-Weill Center for Peripheral Neuropathy in Manhattan, a leading research center and clinical practice, which had the capability of doing specialty lab work and a skin biopsy, the gold standard for determining small-fiber damage. I was fortunate there to meet Drs. Latov and Chin; the latter did the skin biopsy on the spot after taking my history and seeing my previous test results. It turned out to be the only test that showed anything--my intrapidermal nerve fiber density was 2% of normal (you read that correctly) and what small fibers I had left were swollen and damaged.
While it was gratifying to know this was not all in my head (and believe me, that had been suggested in more than one doc's office), no direct cause for this has ever been found. An autoimmune post-infectious autoimmune process is suspected, but as all standard antibody tests were negative, very hard to prove (it could be that I was producing antibodies unique to me). Fortunately, this appears to have been a monophasic occurrence--the process burned out after destroying most of my molecularly similar fibers--and over the years I have experienced some slow, partial recovery (at my last skin biopsy. I was up to 11% of normal density), along with a dimunition of symptoms. I will likely always have some degree of symptoms, though.
More recently, I have also become concerned with spinal issues, as a weightlifting injury has left me with right trapezius muscle spasm and a C6-C7 right radiculopathy. This may be exacerbated by my other neuropathy, as many of us have reported that one neurological insult leaves us far more prone to others compared to "normals".
The whole process made me much more health aware, much more of an advocate, than I ever would have been--I went from not even knowing the word neuropathy to a fairly knowledgable non-medical person who gets to actually comment on some of the Cornell research studies before they're published and who's actually made a sort of second (non-paying
) career out of health advocacy.
I'm very outspoken about the positive aspects of boards such as this one for people who are alone with unusual conditions; the support is invaluable and the knowledge base overmatches that of almost any university research faculty. (You also get to hang out with other geeky autodidacts.) Most of all I remember how frightened and alone I felt at the beginning and how supportive people on the Internet were and I'll be damned if I'll let anyone else suffer through such fear and frustration and insensitivity if I can do something about it.
Otherwise, I have an ultramarathoning wife, an adopted basketball-crazy 9-year-old adopted Korean son, and am a Master teacher/tutor/trainer for a well-know test preparation company (geeky autodidact again).
I'm glad to be here and to be invited to be part of the team. (And short-winded I'm not.)