Hello - Dopa Responsive Dystonia


This might seem a bit of a strange one because I am a medical mystery!

I think I may have very mild dopa responsive dystonia which presents with parkinsonsim symptoms but every dr or consultant I see just says I am interesting but don’t know what’s wrong with me. From what I can tell dopa responsive is like a a juvenile version of parkinsons although I can’t seem to find much information on it and was wondering if anyone on here had come across it.

Reading the forum I have a lot of symptoms mentioned on here even the ear wax problem!

To put it short I have cog wheel rigidity, postural imbalance, I can make my thigh muscle tremor, my handwriting has always been poor and scrunched up and recently my feet seem to be in spasm. I also have tight short muscles (I have muscle hypertrophy in my legs) which I have had since I was a teenager and a slightly off walking gait.

If anyone has any information about dopa responsive it would be good to hear from you.

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Hi Phil, welcome to the Forum.

There’s lots of information about the link between Dystonia and Parkinson’s on our blog, here: https://medium.com/parkinsons-uk/dystonia-and-parkinsons-ask-the-expert-e4b60bc20900

Hope you find this useful. Please do feel free to get back in touch with any further questions.

Best wishes,

Moderation Team.

Thanks for the info very interesting.

The consultant has agreed to out me on a 3 week trial of L-Dopa I asked him if DRD was a one way ticket to full on Parkinsons but he didn’t think so but although reading that article I am not so sure.

My other issue is I am sure my son was born with this (where as I think I aquired it through a virus) this makes me questions in he has infantile Parkinsons.

There seems to be lots of different names for Dopa Responsive I suppose the question is will they dig deeper and try and find out the exact one or just leave it.

I also have a whole load of questions about how it affects my sons motor skills and behaviours and can it be linked to things like autism. The paediatrician was going to check him for autism and Dyspraxia type symptoms could they be a knock on effect or is it just the lack of dopamine causing his issues.

So many questions the neurologist will love me.

I know this is an old thread and hope you have answers now but I was diagnosed with DRD in 2013 and there is an active and supportive group on FB with a wealth of info too.

Hi Phil

I realise this is an old thread too. But I was diagnosed with DRD and prescribed Madopar in 2015. Everything improved, but I still have huge issues with my mobility and am having to go to the physio regularly. Initially Medical Professionals thought I had ataxia as DRD had not been relised when I was small and so my body evolved to cope with that. The Madopar helped with everything else, but not the fact that my muscles in my back and legs had all joined together to form two huge back and leg muscles.

I discovered my brain was not sending the correct signals to my muscles and so I wasn’t using my muscles properly at all.

I’m wondering whether anyone has has had this problem?

I look forward to hearing.