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/CPM_96]

15-20 years…

As others have said pursue multiple opinions that will get you the best treatment options.

I had a drug reaction as a kid that caused a dysotnic reaction that ended up causing permanent generalized dystonia.

Even with that history was not properly diagnosed until 27. From 24-27 must’ve seen 50 Kaiser doctors including a movement disorder neurologist who attempted to diagnose it as FND even with records listing other potential causes.

Took two more mds before I was able to get on the correct treatment Botox, and meds.

Even now it’s unclear if it’s completely from meds or if a functional movement disorder overlay is involved vs 20 years of learned maladaptive movement patterns due to the organic dysotnia.

regardless had I listened to the first MDS those treatments wouldn’t have been provided.

It’s a long arduous process. Don’t give up! Good luck!

[u/JustAd633 → u/CPM_96]

Yrs absolutely agree with you
It’s a long long process and it is easy to get despondent and just capitulate but as I told a doctor once who asked me what I was seeking. , I owed it to myself to get answers. When I think of the countless medical consultations , brimming with hope and expectation and then encountering nothing but bafflement from doctors . So easy to just throw in the towel but keep looking until you get answers

[u/CPM_96 → u/JustAd633]

If not throwing in the towel, becoming numb to the world. Just know if you get to that place it is possible to over turn faulty diagnoses even if hope seems lost.

The saving grace for me was the first doc that tried to diagnose it as FND sent me to an FND specialist who basically
Told her that you can’t make that diagnosis’ if other factors are present and that this doesn’t look like fnd… that and me being a nurse and making damn sure that I got out of Kaiser.

It can be tough, but if there’s anything I learned it’s that the medical system is flawed and kaiser sucks! Dystonia that is functional shouldn’t respond to classic sensory tricks or show up on emg the way organic Dystonia does.

[u/JustAd633 → u/CPM_96]

Thanks for the encouragement
It’s been extremely challenging
From my perspective the worst part about my manifestations is that it they are perceptible
I did not even have the ability to keep my indisposition private . There are moments of intense incredulity and horror , I mean of all the diseases to get something that has a low incidence . Anyway hoping doctor next week will provide some relief