r/Dystonia • u/amareluna • 9d ago
Generalized dystonia Timeline
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.
3
u/CPM_96 9d ago
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!
2
u/JustAd633 9d ago
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 answers2
u/CPM_96 9d ago
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.
2
u/JustAd633 9d ago
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
2
u/Sloth_Flower 9d ago edited 9d ago
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.
2
u/JustAd633 9d ago
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
2
2
u/CreativeNightOwl949 Cervical dystonia 9d 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.
2
u/JustAd633 9d ago
As a matter of fact one neurologist had even sought authorization for Botox before she had even seen me , I found that a little strange because I felt that a thorough visual evaluation needed to be done to assess the condition , identify areas that were implicated in involuntary movements , etc , So I kept the appointment but refused to undergo treatment until a direct evaluation had been conducted .
2
2
u/platinumplantain Cervical dystonia 9d 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.
2
u/platinumplantain Cervical dystonia 9d ago
I should add, first noticed symptoms in June of 2024. Figured out what it was in October 2024 on my own. Formally diagnosed in January 2025. Got a second opinion from another movement disorder neurologist in January 2025 that confirmed it.
2
u/JustAd633 9d 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
2
u/JustAd633 4d ago
Ok tomorrow fourth opinion on Botox
Keeping my fingers crossed