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On Sun 14 Nov, J. R. Bruman wrote: > I don't think so; but what do I know? I haven't had it myself, and I'm > not even a medical professional, but I see reports of it from a few list > members, that make me wonder. As I said before, the Merck Manual doesn't > mention it, although it does impute certain ANTI-dopamine drugs, and it > has plenty to say about the various forms of dyskinesia and their cause. > Likewise, the long paragraphs in the PDR Sinemet description covering > Warnings, Precautions, and Adverse Reactions (note the descending order > of importance) contain no mention of dystonia caused by Sinemet, except > when it is taken together with a tricyclic antidepressant, a class of > drugs well-known to counter the action of levodopa. > > So how explain reports from a minority of listmembers, contradicting the > overwhelming majority experience and conventional wisdom? I suspect the > problem is semantic. It's hard to define exclusively the difference > between dyskinesia and dystonia, and even harder to interpret what each > different patient thinks he feels. I've mentioned elsewhere the possible > confusion of very mild peak-dose dyskinesia with resting tremor, and > since tremor, dyskinesia, and dystonia all involve the contraction of > muscles, perhaps the latter two can possibly be confused sometimes. > > In any case, I've not yet heard of dystonia like that described by Marty > related positively to levodopa. The question might be resolved if he > follows his neuro's advice to avoid Sinemet (and other dopaminergic > drugs), but IMHO, since Marty certainly has PD, that doesn't sound like > a very good idea. Cheers, > Joe > -- > J. R. Bruman (818) 789-3694 > 3527 Cody Road > Sherman Oaks, CA 91403-5013 Hello Joe, and others, Starting about one month ago, I have become a fully-paid-up member of the distonia sufferers club, so I now can contribute my case. I am afraid that I cannot offer any revelations of a general nature, but I'm working on it! About 2 months ago, I started to wake in the middle of one of those luxurious stretches which your body demands after a good (6 hours) sleep but this was immediately spoilt by the begining of a painful cramp in my left calf muscle. I rapidly learned that there was only one way out of this , and that was to stand up as quickly as possible. I managed to stop the cramps by fitting a warmer duvet to and this worked for a week, but then they returned and so far they have stayed. 3 weeks ago, a new phenomenon presented itself: As I was waking, it seemed that ALL the muscles around the ankle area had received a 'GO' signal, and were pulling away as hard as they could. The result was not really painful, but my ankle joint seized up solidly, and from the knee it seemed that I was one solid bone. Again the cure was to stand up as quickly as possible, and take a careful walk round the bed, and it went back to normal after a few minutes. I was not conscious of any particular pain during the rigid ankle period. Finally, (and I think the previous events were pre-cursors of it, came the dystonia. I now wake up with the feeling that my left big toe, and the small toe are arching up at an incredible angle - no real pain; more like discomfort, and pretty scary too. As far as my case goes, T see no involvement of levodopa. My usage of it has been stable for years, at 800 mg/day (I also take Permax, and this I increase steadily by half a tablet every 6 months to counter my deterioration. Recently I went up from 5 1/2 to 6 x 1mg Permax per day quite high, but I think that if anything, it is probably the on-coming point where vitually all the natural dopaminergic cells are dead and I must rely on the tablets that has started the distonia. So far, I can see only one fix for this problem - sleep standing up !!! A message for Joe Bruman - As you said, this is one of those things in PD which you have to experience first hand to understand. I can say that now and I also see that I was well advised to keep out of the subject prior to these last couple of months. No disrespect intended, that's just how it is. I would like to see some hints and tips- anyone! Regards, -- Brian Collins <[log in to unmask]>