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PARKINSN Archives
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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:
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>> 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
>
----------------------------------------------------------------------
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Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 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Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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