--or, at least one of the people--who wrote that the neuropathy journey was not one I would have initially chosen to go on, but that it had proven to be an experience that, on balance, I would not have traded for others, in that it had provided me with knowledge and advantages I would not have otherwise uncovered. (I think I first wrote this on the old Braintalk boards, pre-crash.)

Much of the knowledge and many of the advantages have come right from boards such as this one, which have not only provided me with a place to vent, but with the friendship of people I otherwise would never have known existed, to say nothing of the support said people have provided. I also gleaned a tremendous amount or knowledge of neural issues in particular and health issues in general, such that now I feel quite comfortable going toe-to-toe with most doctors on most issues--something that six years ago would never even have been considered. Of course, my trip thorugh the medical system, with its insurance idiocies, incompetent/uncaring professionals (not all, but far too many), and non-patient priorities provided quite an education in itself, and radically changed my viewpoints on health care in the US (and by extension, my viewpoints on a number of other issues). So, on balance, although I wouldn't wish painful neural symptoms on anyone (OK, maybe some of the stupid "all in your head" docs I encountered, but jut for a few minutes to promote empathy), the experience of coming through it, in retrospect, has, overall, provided its own education and social context, and those I value greatly. That's not quite the same as celebrating the disease, as Barbara Ehrenreich has pointed out has happened to some women who found having breast cancer empowering ("getting breast cancer was the best thing that ever happened to me"); I wouldn't go that far. But I understand how fighting a disease that is met with skepticism and finding new resources you didn't know you had can be gratifying, and life-altering.

In essence, then, I think you two just are coming at this from opposite sides of the same coin. All of use have had, to greater or lesser degree, the experience of having to seize empowerment, by gaining knowledge and demanding tests, by bringing up treatment possibilites to docs who should know about them and demanding they make the effort to implement them. For some, this may be along the avenue of supplements and lifestyle changes, for some it may be insistence on skin (rather than sural) biopsies, for others it may be demanding effective narcotic pain treatment when necessary, or immune-modulating therapies in the face of equivocal evidence they might be helpful, or just insisting that some--SOME!--appropriate testing is done, and standing up to those who would dimiss or minimize our symptoms.

These boards provide support and differing points of view on all this, of course, and rarely are the points of view ill-reasoned. Most of us who have progressed from mostly taking advice to mostly giving advice take great care to document our viewpoints with appropriate references and evidence (in fact, far more than most practicing physicians do day-to-day--one of the major weaknesses, I feel, in how medicine is "done" in 21st century America), but since allopathic medicine and alternative medicine are both inexact sciences, and in fact have much to do with art, in practice, we can certainly have well-reasoned disagreements.

I know that these boards--and this one in particular--are fulfilling functions that in a much better world, they would not have to: support, knowledge, advocacy. Old school medical professionals who disdain such "internet" vehicles are in reality fearful, and they have every right to be--the proliferation of knowledge, and of shared experience, are very threatening to those whose living, and societal power, depend on an esoteric, incomprehensible realm of expertise; if patients can know as much as doctors, how can doctors keep charging as "we know best" professionals? This is why I feel, of course, that the whole medical model is undergoing gradual but inexorable change. Those docs who embrace more of a partnership role than a Moses-with-the-tablets role are likely to have greater success going forward--and slowly, more of these doctors are appearing, though it will probably still take much more of a structural change in the supports of the profession to turn this into a floodtide.

In the meantime, we can all do our parts here in helping to make that an eventuality--questioning, explaining, empathizing, criticizing, and having the occassional pity party--none are automatically out of place.