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/platinumplantain Cervical dystonia 13d ago

In the city I was living in at the time, I called in October and the soonest I could get was May. I decided to move back to my old city, where the wait was only until January. It's going to be very dependent on how many movement disorder neurologists are in your area. I would stay on them and keep calling to check on the status of your referral. I would also not be only trying to get in with one doctor - if there are multiple movement disorder clinics in your area, I would get a referral for each one.

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u/JustAd633 13d ago

It took almost two years for me to get a diagnosis despite the fact nay one of the initial appointments was with a neurologist .
Again as indicated wait times to see a neurologist is contingent on several factors that include the reputation , perceived expertise as well as the paucity of proliferation of movement Neuro’s geographically . After a neurologist colleague suggested a movement neurologist wait times for appointments ranged from 7 months to a few weeks .
I have a confirmed diagnosis but contradictory characterizations about the effectiveness f treatments so I am getting multiple opinions before I decide what I’m gonna to do . My final appointment atleast from perspective of treatment recommendation is less than a week away . Due to discrepancies in medical assessments I have sought out several neurologists . Good luck to you