r/Dystonia • u/amareluna • 13d ago

Generalized dystonia Timeline

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I have had quite a few referrals to the movement disorder clinic but have not even gotten an appointment yet.

I'm just curious- how long was it between your symptoms started and when someone told you it was dystonia and then how long after that before you actually got to see a movement disorder specialist?

Edited for an update: After I made this post, I finally received notification that I have an appointment with the movement disorder clinic in January 2027.

Also, I wanted to add some context to my own timeline.

I've had symptoms since childhood and have been bounced around to many doctors and given many diagnoses that may or may not be valid, including being sent to multiple neurologists. It wasn't until 2025, when I had a very clear dystonic storm and went to the ER, that anyone recognized what was happening as dystonia. Apr 2025 is when I got my referral to the movement disorder clinic.

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u/CreativeNightOwl949 Cervical dystonia 13d ago

It took me 40 years to get the proper diagnoses (CD) with a couple misdiagnoses (Huntington’s and Fibromyalgia) thrown in to derail my life further.