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Jo Ann I've had 4 Movement Disorder specialists diagnose me with Parkinson's/ Sinemet worked on the first dose only. My I-DOPA PET scan says PD. I'm satisfied with the diagnosis of idiopathic PD. PD meds don't help everyone. Ray Ray ----- Original Message ----- From: "Jo Ann Coen" <[log in to unmask]> To: <[log in to unmask]> Sent: Saturday, March 19, 2005 10:31 AM Subject: Re: (my progress report) / AMANTADINE... ? / calibration > Ray - I read somewhere in the last few weeks or so, that if the PD meds > don't work, perhaps the patient has PSP, or MSA. I'm not a neuro, so I > can't say, but I wonder if you have had any other dx? Best wishes, > Jo Ann > > On Fri, 18 Mar 2005 12:03:14 -0700 rayilynlee <[log in to unmask]> > writes: >> Ariela, DBSs definitely tamed my bilateral tremors, but that is >> all. the >> PD meds don't help me at all. Ray >> ----- Original Message ----- >> From: "ariela" <[log in to unmask]> >> To: <[log in to unmask]> >> Sent: Friday, March 18, 2005 12:17 AM >> Subject: Re: (my progress report) / AMANTADINE... ? / calibration >> >> >> > dear hilary, >> > >> > just the information i'm looking for!!! what you're telling is >> amazing >> > stuff! and yes, yes, i realize PD is a snowflake disease and >> everyone >> > responds differently, but still, this is quite the endorsement for >> > amantadine! you say it worked well for you for 6 years. >> heck, we'll >> > take 3 years. we'll take one. sure beats DBS right now!! >> > >> > and re. DBS: i was under the impression the procedure worked best >> to >> > alleviate tremor -- less so for rigidity, and/or dyskinesia.... ? >> am i >> > off-base on this? can you, or anyone else, please stir me right? >> > >> > as to new stuff coming down the pike, i hear you. although >> personally >> > i'm less excited about rasageline -- which is basically a >> variation on >> > selegeline (or 'eldepryl'). in fact, my Big Next Hope is >> ROTIGOTINE >> > which is a new receptors-agonist that most importantly has a >> 24-hr. >> > delivery system -- i.e., it comes in a transdermal patch that >> introduces >> > the drug into the system continuously and evenly. now THAT in >> itself >> > sounds to me like a novel, sound approach! (if only the drug >> companies >> > would concentrate on formulating levodopa as patch-delivered!). >> but >> > regarding rotigotine, add to it the fact that for a NEW agonist, >> it has >> > shown, in replicated trials, a huge statistical improvement in >> on/off >> > times, and i say (to steal a line), rotigotine, do i hear you... >> :) >> > >> > thank you very much again, >> > >> > cheers, >> > ariela >> > >> > ==== >> > >> >> Ariela, >> >> >> >> About six years ago,, my dyskinesia became so bad that I >> volunteered >> >> for DBS surgery - then still in the pre-trial phase. But >> before my >> >> turn came, I read on this list about someone who took >> amantadine >> >> and how it almost miraculously cured his dyskinesia. I >> persuaded my >> >> doctor to let me try it, and within 24 hours I no longer matched >> the >> >> requirements for volunteering for the DBS trial! >> >> >> >> Now, 6 years later, it is losing its effect, and I am left with >> >> increasing dyskinesias and dystonias. I have taken every PD >> >> medication that there is, and the best response was with >> amantadine. >> >> Until recently I was taking eldepryl too, but that seemed to >> lose its >> >> effect, so I am sticking to my sinemet and amantadine and eagerly >> >> waiting to see what is new coming down the pipeline. (Rasagaline, >> do I >> >> hear you?) >> >> >> >> hilary blue >> >> >> > ==== >> >> >> >> 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 >> >> ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: >> mailto:[log in to unmask] >> In the body of the message put: signoff parkinsn >> > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn