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ME ME ME ME ME!!

  i think i have been on it for five years. some things have changed in that time (i now have zero interest in totally passive pastimes like watching tv, seeing movies, and reading (and i used to read *a lot*)) but there is no way of knowing what has caused that change - well, unless i were to stop mirapex.

Diane Nicolaou <[log in to unmask]> wrote:
  Is there ANYONE out there (besides me) that takes Mirapex and has no problem at all? I have not noticed ANY symptoms in over a year that I have been taking it (along with Sinemet).
Diane

-----Original Message-----
>From: Beverly Bashe
>Sent: Jan 14, 2006 9:31 PM
>To: [log in to unmask]
>Subject: Re: mirapex and requip
>
>Hi. In response to your query, my husband David showed symptoms of PD when he was 31---38.5 years ago. The doctor gave him l-dopa for over 20 years, although he couldn't diagnose David with anything but "a neurological problem." Why, you might ask, did he give David l-dopa? In his words, "Because that's what works." David was finally diagnosed with PD about 10 years ago.
>
>David did develop dyskinesias...and he had off-and-on hours. However, l-dopa really was "what worked." Whenever he went off the meds, he was extremely uncomfortable with pain in the instep of his right foot, and very little normal movement of his entire right side. Even with the side-effects, he was much more comfortable on, rather than off, the L-dopa.
>
>Although l-dopa is far from perfect, unfortunately it's the best of what we have.
>
>Bev Bashe, cg 31/69
>---- m power wrote:
>> hi all,
>>
>> in what i am about to say, i am speaking in general terms - i do not mean to minimize anyone's experience of the side effect of obsessive behavior.
>>
>> In the study that came out in 2003, 1.5% of the people who were put on mirapex developed serious gambling addictions - that is "only slightly higher than the reported rate in the general population, which ranges from 0.3 to 1.3%." does anyone know if that is even statistically significant?(http://www.abc.net.au/science/news/health/HealthRepublish_922460.htm)
>>
>> by contrast, 100% of early onset folks put on l-dopa will develop both dyskinesias and on/off fluctuations within 6 years (see Quinn, Young Onset Parkinson's Disease, 1987, Movement Disorders, Vol. 2, no.2, p. 73-91) and 75% of people put on l-dopa "will no longer have a smooth, stable and effective response" after five years of treatment - in other words, 75% overall will develop dyskinesias and on/off fluctuations within five years (see Fahn, Parkinson Disease, The Effect of Levodopa and the ELLDOPA trial, Archives of Neurology, 1999)
>>
>> i am curious - i do not experience on/off fluctuations or dyskinesias, having never taken l-dopa, because looking in from the outside, it looks like somewhere i would do everything i could to avoid going. and yet, people rarely talk about them (and they certainly don't get the press 1.5% gambling does, but of course that could be because these other statistics have been well known in the research community for at least 20 years) - are they just not as bad as i think they are? or are folks resigned to experiencing them because l-dopa is the only thing that works (or worked) for them? or do folks not know that the risk is so high until it is upon them?
>>
>> if anyone has any thoughts on the subject, i would love to hear them. i simply cannot understand how a drug that has such a gargantuan chance of leaving people with disabling side effects has been "the gold standard"' for about 40 years.
>>
>> mackenzie
>>
>>
>> Beverly Forte wrote: I too stopped Mirapex because of some compulsive behaviors and my
>> neurologist refuses to give me Requip. I had dbs brain surgery in Dec 2005.
>> After stopping the mirapex i went into a deep depression which does not seem
>> responsive to antidepressents. My energy is also extremely low. Obsessive
>> behaviors now? Nope.. I am lucky to get out of bed every day. Has anyone had
>> this experience and any suggestions? I have a doctor's app Jan 16th and hope
>> to have my own suggestions.
>>
>> Thanks...for sharing.
>>
>> Bev in Tex
>>
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