Or, put another way, can PD patients who are not on any dopamine replacement therapy eventually develop dyskinesia?

I thought the answer was kind of obvious myself, considering it's called Levodopa Induced Dyskinesia.

But, the reason I ask is because I've had two widely respected neurologists give me two completely different answers. One of them, an MDS, says that the disease causes it, not the drug.

hi cal,

i think it is med induced. The trick for me is just taking the right dose. i've said this before so I'm repeating myself, but i don't get dyskinesia from my current dosage. which is high, but I don't take anything else dominergic. i take amantadine, and nortriptyline, xanax. No CR, no agonists or MAO inhibitors, just sinemet. i get dyskinesia when i go off. But it can't be just the disease or I would wake up with dyskinesia. I wake up with dystonia. It goes away with sinemet.
And round and round we go.

two cents.
paula

Dyskinesia is part of the disease to the extent that only people with pd (or with dopa loss) exposed to l-dopa get dyskinesia. For instance, a healthy person would not develop LIDs from l-dopa.

Debi

that's true Debi. It seems like dyskinesia is bad and progresses [without meds] to dystonia, which in my case, is worse. These symptoms are both, for me on this particular protocol [can't emphasize that enough] due to a lack of dopamine.

one more point. the dyskinesia i used to get from being overmedicated, caused different movements than i get now from going off. this dyskinesia starts with head bobbing and I do wonder if i could have tardive dyskinesia also.

I get dyskinesia-
1-from requip
2- from bright sunlight particularly in my peripheral vision
3- talking on the phone and
4- from the spice ginger. Tom Isaacs told me that he had the same reaction BTW.

This is a fundamental question that is asked by all PD patients who are regularly put on l-dopa medics. Another similar question: Should one try to take minimum dose or follow an aggressive dosing from the start as many neuros advocate nowadays… and weather the choice between the two approaches makes any difference to the time and severity of dyskinesia and other side effects of l-dopa. I think it is outrageous that with billions of dollars spent on research and after 50 years of using this drug the medical establishment are not able to answer these questions. Or perhaps they know the answers and would not tell us!

Maybe if they looked at US more carefully, we are all so different, and put onto different medication regimes too, nobody is keeping track.......

I don't think that Dr. Michael Rezak (APDA Medical Director) will mind me posting his recent email to me. I had a question about the source of my pain (the site of the pain moves around, from my neck that has had 4 levels of cervical fusion, to my lower back where there are 5 "bulging" discs, to my shoulders. The pain has been labeled "Dystonia." And thank goodness not everyone gets it!

This was his answer to a question I had about dystonia and dyskinesia and when meds should be adjusted:

Painful dystonia is a form of dyskinesia. It can be either an ON “peak dose” phenomenon or an OFF phenomenon. If the dystonia occurs upon arising in the am or when a dose is wearing off then it suggests that it is an OFF phenomenon and meds should be adjusted upward. If it is a “peak dose” problem then meds should be decreased.

There are a few scattered case reports where a patient developed pain (without dystonia /dyskinesias) just from being on a dopaminergic. This is not well understood.


As Debi indicated. it is a form of the disease itself. Yet, it can also be a side effect of long-term L-dopa replacement therapy.

Peg

so i take more sinemet and poison myself to avoid going off and getting dystonia, constantly feeling like crap but doing what the doctor said nevertheless.

simple,

Paula, what do you want, a cure or something? Of course you must do what the doctor says!!!