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
> >
> >
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