Hi all!! I have been diagnosed with Focal Dystonia and looking for anyone else with this issue. I am a 52 year old lifelong swimmer - club all my youth, D-1 college and the last 12 years competing on the USMS circuit. About 2 years ago I dove in the pool and my left foot went into an involuntary distension and it has happened every time I am in the pool since. I can't kick and I have lost my interest in swimming as the pain has increased and my speed and engagement have decreased. It only happens when I swim. I don't have Parkinson's or Huntington's and there is no evidence of damage in my brain or spine nor is there any neuro damage as evidenced by an EMG. Focal Dystonia is rare, but when it does happen it is usually in musicians and runners. My neurologist is trying many experimental things (botox and mirrror box training so far, "deep brain" stim is something else we could try but that is usually reserved for like paralyzed stroke victims....) and I do intensive PT every week which only relieves symptoms. Neuro is going to take my case to his peers, but I am wondering if there is anyone else out there with whom I can compare notes???????
I've never heard of this disorder before. Can you provide a quick synopsis from a patient's perspective on what exactly it is, the symptoms, known or proposed mechanisms/causes, and any treatments (you mention Botox and mirror box training--the latter is what they use to help people with Phantom Limb pain, right?) Anyhow, it sounds like a very disturbing condition. Is it only your left foot? Does it contract into a right angle with your leg, almost like a cramp? Would you still be able to swim with a pull buoy? How long does the dystonia last? Once it sets in, is your left foot affected for the rest of the day? Longer? Sorry if I sound nosy, but I find this fascinating.
I've never heard of this disorder before. Can you provide a quick synopsis from a patient's perspective on what exactly it is, the symptoms, known or proposed mechanisms/causes, and any treatments (you mention Botox and mirror box training--the latter is what they use to help people with Phantom Limb pain, right?) Anyhow, it sounds like a very disturbing condition. Is it only your left foot? Does it contract into a right angle with your leg, almost like a cramp? Would you still be able to swim with a pull buoy? How long does the dystonia last? Once it sets in, is your left foot affected for the rest of the day? Longer? Sorry if I sound nosy, but I find this fascinating.
