I was diagnosed with dystonia about three years ago, hands trembling when drinking anything. No treatment or follow up
I am now head nodding , especially after lying down and in the morning when getting up, also have hand trembling at this time
also have toes and feet curling when lying down
Been referred to neuro, GP - PD ?
my question is , I dont have any slowness or stiffness so surely not PD as my understanding is you have to have the stiffness/slowness
so maybe only exacerbation of dystonia
thanks for reading if you have got this far
Hi and welcome to our friendly forum, @ELO59. I’m sure our group members will be along soon to chat with you.
You’re curious if you might have Parkinson’s and only a specialist can diagnose this. Your GP will refer you if they feel Parkinson’s is a possibility. Was it a neurologist who diagnosed dystonia? it’s certainly worth revisiting your GP if you feel things have worsened.
There are over 40 symptoms of Parkinson’s, with the main three being tremors, stiffness, and slowness of movement. Everyone experiences it differently and if some of these are mild, they may go unnoticed. We have a very good page about this at Do I have Parkinson's? | Parkinson's UK. Give it a read.
I do hope you get some answers soon. Not knowing can be very disconcerting.
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I was diagnosed in 2018 with no symptoms at all. Since then I’ve joined our local PUK support group and met sufferers with such a range of presentations. As Janice said, there are so many different symptoms. Speak to your parkinsons nurse, they are amazing at sensible down-to-earth answers. Neil
thanks so much thats helpful
that must have been a bit of a shock
It was! I thought for a long time they must be wrong, then I didn’t want to join the local group because I didn’t want to see what I would become. But its not like that. The meds are very good at controlling PD, and many of the members are carers or partners. And it has been a great way to be sociable without worrying about being judged. Best of all it is an easy way into the exercise regime which is so critical at keeping it at bay.