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
>> >
>> >
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