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I've been reluctant to chime in after reading about subject lines. This relates to dystonia and also to the definitions of dystonia and diskinesia. I'm a relative newcomer to Sinemet therapy but I believe it's unrealistic to wait until your body is screaming for it to try it. I'm hoping there will be a cure before my body starts reacting to the Sinemet in the form of dyskinesia. Already I have distonia--it was particularly bad last weekend, awoke twice in middle of the night, yelling "ouch, ouch, no no" the first time, and I won't even bother repeating what I said the second time! Standing up is the only relief I've tried, but would be interested in knowing more from others. Definitions: taken from a brand new publication from Willamette Columbia Parkinsonian Society, given to members of the Will Cope Society here in Portland...but if anyone wants a copy, I'm sure if you write them, they'll be happy to send one out. Printing of the publication was generously funded by a grant from DuPont Pharmaceuticals, so.... why not try? Write them at Willamette-Columbia Parkinsonian Society, 1014 NW 22 Avenue, Portland OR 97210. They also warn folks about reproducing any part of the publication without prior written permission I notice after typing these two short paragraphs...aargh! Although only 15 pages, it's a jewel for referral for folks not too up on all this, like myself! DYSKINESIA: abnormal rapid involuntary movements of one or more parts of the body. This phenomenon is most commonly seen after years of levadopa (Sinemet) therapy. (hmm) DYSTONIA: Abnormal rapid muscle rigidity causing painful muscle spasms. It may affect various parts of the body, most typically the lower extremities and feet. Cheers, Brenda diagnosed 3/97 Brian Collins wrote: > 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]>