Well, I'm almost all better! Not entirely, and not without setbacks, but close enough.

I found great help moving away from the "diagnosing" professions like neurology to the treatment-focused professions like physiatry, PT and even TMJ dentistry.

The neurologists stuck very close to the evidence-based research reported on drug-company-funded clinical trials. And there's a lot that those trails do not even study. So I got a lot of blank looks from neurologists.

But when I went to the physiatrists, specialized PT folks and specialized TMJ folks, I heard something unexpected: "Oh, yeah. We see stuff like this all the time. There's not much research, but it's starting."

So, I apparently had a syndrome that involves both nerves and muscles. Nerves overstimulate the muscles (I had fasciculations and many, many trigger points), while muscles (and their effects, like bad posture, tight cervical spine, elevated first rib, etc.) irritate the nerves.

It's a chicken-and-egg question, which comes first. There's a theory it comes from neurotransmitter imbalances in the brain; another suggests an autoimmune attack that goes after potassium channels in nerves (the nerves' "off" switch); and underneath it all are typical musculoskeletal irritants like bad posture, weightlifting, computer use and so on. It apparently also leads to early central sensitization, causing strange referred pain syndromes. The first PT told me she has seen people who get leg pain from manipulation of their jaw muscles, even though this makes no physiological sense at all. She also said that without intervention, this can lead to things like full-blown TOS or RSD.

In my case, a physiatrist told me my adverse reaction to Levaquin years ago may have predisposed me to systemic reactions like this.

Anyway, did at lot of work with PT, dentists, trigger point release, biofeedback, and stuff I can't even remember. I remember the first trigger point session I had. My arms had been so sensitive it was hard to wear sleeves or put my arms on armrests or a bed. Riding home, they still hurt but there was a very strange change in the sensation--like it was breaking up into separate pieces, if that made sense. Over time, I got better, and my last physical therapy session really reduced the holding-a-red-hot-cactus sensation in my hands that made it almost impossible to use a PC.

End of story: I got better! I'm almost back to normal, with some setbacks now and then. Now I have to pick up my business, which suffered under neglect (anybody need a high-priced marketing copywriter ?), but I'm very happy about my health.

I've been meaning to share this, because I've noticed some people on this boards with patterns that strongly suggest a syndrome similar to mine, and I just wanted to pass along the good news.

Well, that was kind of long, but that's my story!