Yes precisely. The value of activism.
I have an article showing most Neuros are 10 to 15 years years behind research and misdiagnosis rates may be as high as 30%.
My baseline includes the above plus
1/ I dont trust Big pharm
2/ I dont like the way health is run, its too corrupt and infected with self interest, worldwide
3/ PD diagnostics are flawed and Medicine has NOT got any real idea at all about what causes PD so all bets are off. As you say " Nobody knows. Nobody. " . I would qualify that but not here ..which brings up....
4/ I believe in Light and truth and see the world as lacking in it right now and not accept otherwise and will resist those who are negative ....but also I understand
5/ PD treatment has, as you pointed out, made Lab Rats out of millions? I am sensitive to this and feel sorry for so much suffering while money pours into wars like Iraq and weapons and rich ** pockets
Bring on the activism
jak
Quote:
Originally Posted by indigogo
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.
|