I had DBS 2 years ago and initially it made a huge difference. Although my movements did not completely stop, they were a lot better.
After about 18 months my movements got worse and my neurologist says I now have developed diphasic dyskenesia which is rare and very difficult to treat. I also have dystonia in my feet and my toes curl up.
Does anyone have experience of this?
Hi Caroline,
Good that the DBS initially helped, but disappointing you are experiencing these symptoms now. I am very confused as to how you decide the type of dyskinesia/dystonia, it doesn’t seem as easy to distinguish what’s going on!
I think I may have diphasic dyskinesia, without much break between each phase. My first meds 100/25mg Madopar are at 7am, I’m walking and feeling almost normal until 9am,( although foot often twists painfully for a bit at 7.30, )when my walk is awkward my foot twists (dystonia like you) that is it more or less for the entire day. I am unable to walk properly my arm twists back . I might have a short period when I can walk a bit better but it doesn’t last long. I take Madopar 100mg 4 x daily with just over 3 hourly intervals.
I am seeing a neurologist in April for my initial assessment for DBS. I am really hoping this is going to really improve things for me
Did the neurologist you saw suggest anything? What meds are you taking?
Best wishes
Steph
I take madopar at 8,11,2,5 and 8. My neurologist explained that the diphasic dyskenesia is difficult to treat as it is very unpredictable when it happens. It doesn’t follow the usual pattern that can be managed more easily.
My mornings are pretty much always the same.
Tablet at 8 then dyskenesia and dystonia at 8.30 for half an hour or so, then dyskenesia and dystonia starts again at 10.30 till around 11.
Tablet at 11.00. then 11,30 dystonia/ dyskinesia for half an hour or so.
It is always my legs ,ankles and feet that are affected .
Afternoons and evenings are a whole different ball game… I get lots of off periods, dyskenesia and dystonia that can last for hours sometimes. Lots of freezing and falling etc. I use a walker now.
The DBS stopped my head nodding, and upper body movements, and helped with swallowing but does noting for my lower body movements,
I think I have also, dyskenesia in the form of dystonia, on the neck and shoulder, sometime happen during wearing(not being off) sometimes during ON, it is difficult to tell whether is biphasic dysknesia or just off
I have DBS 3.5 years ago, my worst side(left), left plam jams together quite often.
Hi both,
I’ve not had DBS but am fairly confident that I have diphasic dyskinesia, which my new Neurologist agreed with at my last appointment. The particular manifestation of this is uncontrolled movements of my lower left leg when I am wearing off which ends up looking like a “silly walk’. (Interestingly there is a research article specifically about this “silly walk” presentation).
My neurologist recommended DBS so it’s a bit worrying that you have developed this particular symptom after having it.
It’s all very confusing to try and work out what’s going on isn’t it!
Nick
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Yes, very confusing… my neurologist says the DBS is as good as it’s going to get after many trips to Oxford to try to get my dyskinesia under control.
He has prescribed entacapone to help with wearing off too quickly.
It is a bit disheartening though, I had high hopes for DBS
Do you feel the DBS has been beneficial in other ways?