Dystonia Society

Dopa-Responsive Dystonia

Hi everyone, I'm new have suffered with Dopa-Responsive Dystonia for 5yrs after 200 blood tests and being told it's in my head while I'm spasming away for up to 24hrs on & off and also have wear and tear of the cervix of the neck, plus various disabilities.

It would be nice to chat with the community whom understand what it's like to have Dystonia and the fatigue that comes with it. As I don't know anyone else with Dystonia and most people have never heard of it.

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Hi, I suffer with dystonia and rheumatoid, my neck hurts all the time it's awful living with this and you are right people don't know what it is. It took the doctors 3 years to diagnose it and I think that's what's caused the damage. I have Botox every 10 weeks but the pain never goes. Hope you get some help and some relief. Xx

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Hello Sharlynn,

Botox is something I have never been offered, I am on Pregabalin (Lyrica) for my neck amongst other medication as I have a chronic spinal condition.

I find the Pregabalin works well and perhaps it is something you could ask for, if you haven't already xx

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It does seem incredible that there are so many common symptoms with cervical Dystonia ( wear and tear pain, taking so long to diagnose, no- one including gp’s ever having heard of it, people thinking it’s in your head and not believing you etc etc....) and yet there is so little investment in researching more effective treatment, better understanding and more accurate knowledge about the condition. I wonder how many of us have ever been asked to complete a detailed questionnaire or better been ‘interviewed ‘ about the reality and impact of the condition on sufferers themselves.

Thank you Dizzy 64.....I do find it helpful to read comments such as yours.....lifting spirits at least for a few minutes.

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Hi Rkai you're right I've never been asked to fill anything in and can't go out on my own as I'm too vulnerable as I have other health conditions and a chronic spinal condition I never let it get me down even though it all has had a massive impact on my life. The hardest thing I find is the tiredness by 1pm I feel exhausted and have to have a sleep

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