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Greg, Marty, Brian and all, I believe there can be peak dose dystonia as well as a dystonia which results from not enough l-DOPA. I will check this further but I seem to remember having some prior to my STN DBS. I have had trunkcal dystonia and it is no fun. I think that the best way of dealing with it would be to minimize the fluctuations in the dopamine (l-dopa level) but I would listen to your neuros especially if you trust them and if they have a subspecialty in Movement Disorders. Greg you said you never met an MD with PD. Well here I am a retired -on disability psychiatrist. --- Original Message ----- From: Greg Sterling <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, November 12, 1999 9:15 PM Subject: Re: Trunkeal dystonia > Mary, > > I'm no doctor,but I do suffer from awful foot dystonia. I've never met a > Dr. with PD. I suppose they're out there somewhere. Sinemet is the only > thing that keeps me walking. > Greg > 47/35/35 > > -----Original Message----- > From: Marty Polonsky <[log in to unmask]> > To: [log in to unmask] <[log in to unmask]> > Date: Friday, November 12, 1999 9:52 PM > Subject: Trunkeal dystonia > > > >Hey List, > >Please hear me out: > >For the last few years, I have had tendencies to lean significantly to the > >right--with my whole body--and to experience an overpowering gravitational > >pull, also to the right. The pull sometimes literally pulls me to the > ground, > >and has caused me to fall out of chairs, and the pull and the leaning have > >both led to a generalized loss of balance which, in turn, has resulted in > >many falls, some of them quite nasty--eg the one that opened up a gash on > my > >forehead that required multiple stitches by a plastic surgeon to close, or > >the recent one which broke six ribs--most painful! Anyway, two neuros > whom > >I respect have now suggested to me that my leaning and sense of being > pulled > >are instances of "trunkeal dystonia" which cam be caused by sinemet, just > >like dyskinesia. The proposed remedy for this. Is to wean me off--or down > to > >a minimal level of-sinimet, and to replace it with klonapin. Now, after > >having PD for 13+ years, subscribing to--and reading--the List, > >participating actively and regularly in 4-5 support groups, and attending > >every PD conference or symposium that's come along (and, living in LA, > there > >have been more than a few of these), I have never heard of trunkeal > dystonia, > >.nor of the concept that sinimet causes dystonia (in fact, this is somewhat > >confusing to me, in view of the fact that the dystonia which I have had in > my > >shoulder for the last 2 years is relieved. by sinemet). I just want to > know > >if any of you have heard of any of this , or if you have any thoughts about > >it. Lastly, has any of you experienced anything like this? I welcome your > >input. > >Marty Polonsky > >.... > >.. > > > >. > > > > > >..... > > > > > > > >t > >