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Old 07-07-2010, 10:44 AM
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indigogo indigogo is offline
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Join Date: Aug 2006
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15 yr Member
indigogo indigogo is offline
Senior Member
indigogo's Avatar
 
Join Date: Aug 2006
Location: "all the way over on the West Coast"
Posts: 1,032
15 yr Member
Default If only .....

re: use of MRI in PD diagnosis - it is standard practice to use one in the US during the process of a PD dx, but it is to rule things out because nothing else shows up ("your brain looks healthy; must be PD"). I believe that your (Jak) experience with your doctor seeing something that meant PD is what is interesting; I don't think I have heard of an identifying marker before.

re: the long time use of carbodopa/levodopa - this is a sensitive topic, I think, because it is something that each crop of newbies has more information to work with - both from talking to other patients and from what our docs are learning. We all are lab rats when it comes to taking PD drugs over a period of several years; it seems like we are collectively coming to the conclusion that less is better - that is IF you can accommodate your life to make that work.

It's all a big trade off - some need maximum symptom control in order to keep a job for a few more years - but does that mean shortening their effectiveness? Can people with tremor last longer on a smaller dose? How fast would we progress without any meds at all? Is any of what we are taking toxic? Now? After a few years? In two months? Who knows? Nobody knows. Nobody.

The sensitivity arises from the question, "What if I knew then what I know now ........." If only I had waited to start Sinemet, I wouldn't be so dyskinetic now ........ if only I had started Sinemet earlier to squeeze a few more good years out .... if only .... if only.

That's the value of this kind of forum ..... it leads to some kind of collective wisdom that even our doctors don't understand - but they would have a better understanding if they bothered to seek the wisdom - then act on it. That's the goal of activism; that's why we keep posting.
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“Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony
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"Thanks for this!" says:
anon72219 (07-07-2010), lindylanka (07-08-2010), olsen (07-07-2010)