Indeed I can understand and have felt what a relief it is. For those who struggle it can be a HUGE help. As you point out we are all different and it is wonderful that we have sinemet to fall back upon. It does disturb me the see so many very young people turn first to sinemet without first using some of the drugs you mention first.
I honestly think there are some great docs out there that just don't know what they are doing because this is a learning process. There are also bad docs that like to experiment. There are those that just want to make things better and start people on sinemet too early and end up making things worse. Whatever the situation it is up to the patient to advocate for themselves and process the data into making informed decision for their unique situation.
Given that sinemet has a short effective honeymoon life relative to our life spans it only makes sense to save it for when we need it. Clearly your situation has passed into that phase. Indeed it is a huge relief and I get that. Thanks for the thoughts. The more we share the more we all learn.
I have read about several people that had no issue with immediately stopping sinemet after DBS. It seems to be entirely different in that situation though I don't know exactly why. Unf they had me on 3000 mg per day which is just insane. I had bad doctors which luckily not the case with most.
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Originally Posted by made it up
Hi Dogma,
I've had a firm diagnosis of PD for 20 yrs now so there's unfortunately no question as to whether or not it is in fact PD whereas yours was misdiagnosis.
After trying to hold off as long as possible (around 5 yrs) from taking levodopa but trying lots of different other drugs instead like Eldepryl, Permax, Artane, Amantadine I'd become fairly uncomfortable and unable to do
many of the things I'd previously taken for granted.
I clearly remember my first Sinemet I think it was only 50mg and the relief I felt. It was like my joints had been oiled and my stoop had gone, the relief was astounding!
I agree with you regarding side effects as for me it took less than a yr to develop dyskinesia though i've heard thats more common and quick to develop in young onset PD.
Despite the dyskinesia it felt for me far better than being off.
As far as going off Sinemet after 10 yrs of PD and 5 yrs of taking Sinemet I had no problem going completely off Sinemet after DBS though Ive read enough
about abruptly stopping it to not advise it without supervision by an MDS.
Anyway just thought Id air a slightly different experience.
Best wishes.
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