I'm more than curious to know people's experience's with Dyskinesia - which I understand as the foot twisting and writhing, tip toe dance I do upon coming ON or OFF l-dopa (sinemet or mucuna). For me the beginning of Dysk. signaled the ending of the "honeymoon" period.

Dysk started creeping in after about 2 years of very minimal l-dopa use...and started becoming a problem at about 2 1/2 years...when the on/off phenomena began. DYsk remains the defining and limiting factor in my l-dopa intake.

DOes anyone know what I'm talking about and think it's important? I think there are clues here as to the true cause of PD and should be studied intensly...rather than be looked as an an opportunity for Pharmas to make yet another pill!!

Comments, please. Thanks, Ibby

Hi Ibby,
I have had PD for 17 years now, and the slightest amount of sinemet now gives me writhing dyskinesia. Dyskinesia started around year 4 to 5, but was not a problem unless I overdosed. It has got steadily worse, until now I have cut back sinemet so drastically that I managed all this week on two 50 mg tablets of sinemet, and 1mg mirapex per day. Surprisingly I can manage on that small amount. I still drive (no accidents for 24 years.)
I had 2 dental appointments last month, and I went to the dentist without any medication, to avoid writhing about when I was in the chair. Previously the dentist had to abort a filling when I could not keep still, after taking just one 50mg levodopa.
I also believe dyskinesia is not researched enough. It could give an insight into PD. I can precipitate dyskinesia when I start to eat. The act of chewing seems to initiate it. Am I alone in this?? I suspect it only happens to long term sufferers. How long have you had PD? What level of L-dopa are you on?
Ron

Hi Ibby and Ron,
Dyskinesia started for me the same year I commenced Sinemet.
I found this particularly disappointing as I'd held out taking Sinemet for several years and consequently was unable to function much.
Advice from my neurologist at that time was that as I was relatively young (mid thirties) doing so would delay the onset of dyskinesias, needless to say it didn't.
I found the CR tablets were worse at causing dyskinesia than regular (yellow tablet) and that taking a little Sinemet at more frequent intervals helped too.
Investing in a pill cutter is worthwhile too for more accurate dosing.
The above is what I worked out by trial and error.
I no longer get dyskinesic thanks to DBS so there is a light at the end of the tunnel with that too.
Cheers,
Lee

Does anyone experience DK without sinemet?

I too find dyskinesia a bit of a puzzle. I started on Sinemet 5 minutes after I was diagnosed and it (dysk) never turned up for 5-7 years. Even now it turns up unpredictably. Food seems to be the best management option for getting it under control, and sugar (glucose laden foods) will set it off in my case. One Neuro told me that the definition of dyskinesia is any dyfunction related to our Kinesiology. Thats an awfully broad definition. I look forward to reading your experiences with this bothersome side effect. Has anyone heard of any experiments where they induced dyskinesia in monkeys? Some how a dyskinetic fruit fly doesn't strike me as very helpful in terms of studying this odd side effect.

(rosebud, I'm even more energy efficient and will abbreviate dysk as dk )

Has anyone else noticed an increase in dk if they are dping more than one thing at a time? For eample, I gave up talking on the cell phone while driving, even on deserted highways. It isn't safe under any circumstances, but it worsens my dk terribly. Listening to music while driving is almost as bad. And typing when dk is present amplifies it. Also, eating spicy foods such as hot salsa does it for me.

The main areas affected for me are head, neck, and face/mouth.

Pd symptoms since 1999, self dx 2000, little sinemet in Fall 2004, mucuna 2005. currently 1sinemet 10/100 & 1 g mucuna powder together 2x day. this gives me about 3 hours each time. i too go to the dentist unmedicated for the same reason. can't sit still medicated. i get Nitrous Oxide at the dentisit - it helps alot...but i have to be carried out of there! i know what you mean about merely chewing bringing on dk. it seems that way sometimes , sometimes not. i think that is related to the multi-tasking DK rick mentions below.

My primary DK is in my lft ankle/foot, area of first symptoms - foot drag, toe cramping, foot turning on its outside edge and a lifetime habit of my R leg bearing most of my weight when standing. I think the whole thing is related to some blockage above the ankle and a disruption of normal energy flow.
I think this may be common and i wish the pros would consider PD as originating in the BODY and eventually causing the l-dopa shortage --- ie worn out from over time! They should have DK study clinics to see what is going on. Yes, I think spent neurons are an effect rather than a cause, eventually adding to the probs. I'm stuck on this notion! Ibby

is not a problem for me apart from the occasional slight toe curl when unmedicated.

Ron I don't know how you can restrict your meds to the level you have, and function. Fantastic stiuff. In comparrison my daily intake seems obscene 3x 25/100 mg sinemet, 6 x sinemet 50/200 CR. 3x Tolcopone

What I have noticed is an increase in freezing, particularly at night un medicated. Dx 1996
.

of his foot is exactly my own, although I consider it to dystonia rather than dk. I experience it about five minutes after I first stand up in the morning awakenng. I do not, however, experience it under exactly the same conditions before about 5 AM. It lasts 15 min and disappears. Left foot only.

I am confused as to whether I have dyskinesia or dystonia. I have been taking Sinemet for 4 years now. I call it dystonia, twisting and cramping of my left foot and ankle and all the way up my left side and arm. I wasn't sure if it was the P.D. that was progressing or the Sinemet causing this uncomfortable condition. In the last year it has become worse, It starts as my meds wear off, after about 3 hrs. then about 45 min. after I take Sinemet it gets worse and then after another 20 to 30 mins. it is gone. A couple of hrs later it starts again. At times I find it hard to sit still. Some days are better than others. It has been so bad at times I wonder how long before I will not be able to tolerate it anymore. When it comes to Sinemt I can't live with it and I can't live without it! I was dxs 5 years ago, I also take Requip.