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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