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Painful Legs and Moving Toes Syndrome

PostPosted: December 9th, 2012, 11:05 pm
by kmaze001
I recently learned that was I thought was BFS is, in fact, Painful Legs and Moving Toes Syndrome (PLMT). It's a very rare condition characterized by movement of the toes and pain in the leg or foot. It can be in just one foot (mine is), or affect both. It is constant; my toes move from morning until night. Sometimes they curl, sometimes they all move side to side, sometimes a couple of toes do their own thing. It's very random. I had one podiatrist tell me that my symptoms "made no sense" and that he'd never seen anything like it in 37 years of practicing. One neurologist asked me if I was faking. Finally my third neurologist, a movement disorder specialist, provided the diagnosis. I've had this condition for 14 months now, and I'm told it usually doesn't go away on its own. It's benign, but it is still painful and debilitating. It does not respond well to most medications, although I am told that Botox injections can offer temporary relief, and some folks do respond positively to some neuro meds. I don't know if it's cool to mention here that I've started a PLMT community at WebMD specifically for this condition, but since PLMT is so rare, I wanted to raise awareness just in case there are one or two people here who might appreciate a dedicated community for it. Here is the link: