Dystonia or YOPD at 22

Living with Parkinson's Daily life
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Some background:

Since around age 10 I’ve always had shaking in my legs and arms but only when holding them up in certain position’s. I never really told anyone and just accepted it and as a child didn’t pay it much attention.

Going forward 11 years my shaking has got to the point where it’s really starting to bother me so, aged 22, I saw the doctor who referred my to a Neurologist under the suspicion of it being an essential tremor.

I shake everywhere in my body when I’m using the muscle. So if I try and smile my mouth tremors, if I try to drive and operate pedals my legs shudder, if I hold my legs up I tremor quite violently (to to the point where I look like my entire body is convulsing). Turning my hands causes them to judder while turning and even my fingers shake. Going down stairs can be a nightmare. Essentially every part of my body I use or apply some sort of strain to the muscles to (via using them) I tremor and in some cases quite severely. Right side of me is worse noticeable when I hold my arms out in front of me .

I just feel like I’m permanently tensing and holding my arms up can make them feel tired, even for a second.

When I saw the neurologist she immediately said I had dystonic tremor and dystonia which was odd for someone of my age. She did a blood and urine test to rule out a host of other things. The neurologist also said I had reduced swing in my arm while walking and a resting tremor on my right arm, something I’d never noticed. She’s immediately prescribed Levodopa which seems to be helping with the tremor.

It also seems to help with alertness and sleep too which I’ve yet to report back. Oddly, I also feel less tired and forgetful and less in pain when I’m holding my arms up.

I’ve taken a look at Dystonia but I don’t seem to have as many symptoms in common with that compared to Parkinson’s, which seems at odds with the diagnosis. I don’t have muscle twisting commonly associated with Dystonia. It’s also not focused in one area.

Does this sound like it could be Parkinson’s or more in line with the Dystonia diagnosis?

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Hi Dillonl1997, Welcome to the Forum.

Our website has lots of information and advice on what you should do if you think you may have Parkinson’s: https://www.parkinsons.org.uk/information-and-support/do-i-have-parkinsons

We also have lots of information about Young Onset Parkinson’s, which you may find interesting: https://www.parkinsons.org.uk/information-and-support/young-onset-parkinsons

Always remember to discuss your symptoms with a health professional.

Hope this helps.

Best wishes,

Owen,
Moderation Team.

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Hi

You sound similar to me I think I have dystonia I only get slight tremors when I work certain muscles hard such as my thigh muscles and my right hand has a very slight tremor which you can only notice if I stretch my fingers out.

I don’t have any twisting or abnormalities as such so the 2 neurologist I have seen say it can’t be a central nervous system issue such as dystonia because “my arms and feet don’t stick out” I don’t believe that though I think you can mild forms of dystonia.

Do you have tight muscles? or get muscle cramps? I think I have dystonia because of how tight my muscles are and how at some point they shortened/contracted.