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dear nancy, on the contrary -- your comments are priceless! they do strengthen my conviction that there really is no other way but switching drugs and/or trying new drug-combinations when the regimen you're on finally fails you. i mean, what else is there? not to harp on my pet peeve again, but it's not like DBS fixes anything permanently.... so unless drugs have been completely and absolutely exhausted, why push patients toward DBS as the new trend seems to be? you say you were on "amantadine and sinemet (and mirapex and one other agonist) for many years," but you don't say how many exactly, nancy. do you mean that for all those years these particular 'cocktails' worked well for you? and then your reaction to stalevo. on our side, the verdict's still out. from the sidelines i don't see a huge difference between stalevo/requip my PWP is taking now, and the sinemet/requip he was on until a month ago. he does say that it feels as if the offs and ons are less intense/painful, although i can't say that from the sidelines one could tell the difference.... the way i see it, the main drawback to stalevo is its short duration. since there's no controlled-release stalevo (a longer-lasting version like the sinemet CR formula), one is reduced to taking it every 3 hours, and 'whiney' as it may seem (that is, if it works, make the effort!), this is a difficult challenge if you try to conduct a regular workday. and boy, do i hear you on the switching physicians thing. we've been truly lucky with our specialists, until you find they're averse to trying other combinations when the present cocktails lose their efficiency.... and then they say DBS once too often, and out of frustration you go for another expert's opinion.... :( at any rate, thanks again for responding, and while i'm sure i wasn't much help here either, it was good to vent... :) best, ariela ==== > Arelia - i was on amantadine and sinemet (and mirapex and one other > agonist) for many years . I was switched to stalevo in april or so and > "crashed" in august. Hallucinationsm, sleepwalking, reduceed cognition > and both dyskinesia and freezing all resulted. I don'tr know -- and > never will know -- what to blame. but I am now back on sinemet (900 mg > instead of the 250 i used to be on) and no more stalevo, amantadine or > any othr agonist. I still freeze a lot, and my dyskinesia is sometimes > bad, but the mental stuff has gone. I have changed movement disorder > specialists but I am not sure that was wise. I was so frustrated it > seemed time for a change. > > I think my comments are no help at all as I have not resolved anything, > but I have been there > > Nancy deGrazia. ==== > ariela wrote: > > >rick, > > > >a new movement disorder neurologist we've now been seeing at mount sinai in new york has told us that amantadine is the drug of choice for dealing with dyskinesia. it's the first i hear this take about this little-used drug.... but we're still keeping this option open as my PWP is now trying stalevo (after 4 years on sinemet + requip). he's having an awful time just getting calibrated -- he moves instantaneously between long and painful freezes to awful states of badly spastic dyskinesia. there's just never a simple 'quiet,' 'calibrated' time. it goes without saying that the dosages and frequency have been tweaked and re-tweaked, to not much avail... :( > > > >does it sound familiar to you, or anyone on the list? can anyone please share what you do/have done/know about it? ( > > > >many thanks, > >ariela > > > >==== > > > >>But I just figure it might be worth a little extra pain in order to put off those nasty > >>diskenesias.... > >> > >>Enjoy! > >>Rick McGirr ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn