Looking for other people’s experience of focal Dystonia please. I have been experiencing cramp and spasms in my right foot for about a year. It’s gotten progressively worse over the last month or so and after consulting Dr Google (only reputable websites eg NHS etc) I found the description for Dystonia. I saw my GP last week and she has made a neurology referral for me. I tick an awful lot of boxes for PD with my symptoms getting progressively worse over the last month to six weeks. It’s only ever been my right foot that has been affected but today my left foot has cramped and twisted far worse than my right side has ever done. My question is, a lot of what I’ve seen has one side of the body affected but does anyone have any experience of it on both sides?

Apologies for my long windedness but this has really freaked me out today and I have no idea how long my referral will be. I understand everyone is different but I’d be interested in knowing peoples experience.

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Hi @Vicki1008 and warm welcome to our forum. This is a challenging time as you wait for your referral, but it sounds you are on the right track to getting some answers.

Our friendly members will certainly fill you in on their own stories but, in the meantime, do explore our site at your leisure. You will certainly find some useful information there. For example, this article on dystonia springs to mind. We also have a Helpline with local advisers who can support you. Feel free to call them on 0808 800 0303.

Best wishes,
Forum Moderation Team

Hi Vicki

I’m not sure if what I experience is called Dystonia, because I’ve not been given a name for it. But it sounds similar - my left hand goes into a crampy spasm a few times a day, for 15mins or so. When it’s not doing that it’s not very useful as a hand since I can’t open or close it, nor move my fingers more than a little. It’s very ‘painful’ - (not quite the right word) - ‘intense’ might be better, and the veins stand out and my finger tips go red & I can see the capillaries, .

To answer your question, this affects both sides, but my right hand to a lesser extent. If my right hand goes like this I will be very disabled.

I have a diagnosis of “Parkinsonism” - which might become “PD” after further tests, or something worse.

I hope you get some answers soon.

Hi @Vicki1008 , Welcome to the forum. @Lemon Before diagnosis of Parky I had Dystonic tremors in my hands but no stiffness. Before I had a Deep Brain Stimulator fitted my wife told the Consultant that I had two tremors, the Parky AND Dystonic but this was poo, pooed away, it can only be Parky. After the operation the proof of the pudding was there for all to see as I still have the Dystonia which is in my left hand thus making it difficult for me to eat. Had they taken on board what they had been told I wouldn’t be here now to tell the tale !! The DBS has settled down the Parky side, it means that if I want this sorting out I have to under go another operation, the first time was daunting enough.


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