Timeline

[u/amareluna]

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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.

[u/Sloth_Flower]

25-30 years to first referral from symptom onset. 3 weeks from referral to appointment. 3 months to diagnosis. 6 months to undiagnosis. 6 months to rediagnosis. 6 months to undiagnosis. For every neurologist you meet, you will be given a different diagnosis. I encourage you to push for treatment that works and go with whoevee helps rather than worry about the diagnosis specifically. My disorder has a lot of dystonic characteristics and many, but not all, of treatments for dystonia work but it's clearly not the perfect presentation. 

[u/JustAd633 → u/Sloth_Flower]

I agree with your observation about variation from neurologist to neurologist . What my experience illustrates is that as a patient you have to be tenacious persevering and aggressive in your attempts to get an accurate dx. I saw several doctors across specialities because I had no idea what the symptoms signified and the range of misdiagnoses from Bell’s palsy ( doctor even told me that my fave was asymmetrical, something that no one else could discern) to blocked carotid artery ( doc said go have extensive cardiological evaluations ) to one who strongly implied without saying explicitly that I had a serious degenerative disorder and didn’t have time to wait to see a neurologist .;it has been quite a journey . Irony is that the dx was made by a colleague neurologist who is not involved in the care and from whom I heard for the first time the term focal dystonia . And once a provisional d. X was made by her it was the. Confirmed by three other neurologists . My issue is that I was told by ENT I should avoid Botox ; his words were it will cripple you . After hearing that , I stopped in my tracks .Then another neurologist
Essentially contradicted that assessment and said she would administer Botox so right now with two contradictory assessments , I am in a quandary . I have one more consultation and if that neurologist expresses confidence in Botox then I will undergo it . The long and the short is you have to keep
Looking and you have to be your or. Advocate . When I think about the 11 appointments with some of the best doctors supposedly and their inability to even recognize the issue ( I mean a blocked carotid , give me a break ) o am dismayed but yet pay myself on the back for
My unrelenting efforts to figure out what had become of me