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.

DOGMA,
i too suggest that one not take any more than you need OF ANY DRUG but i also think you should not be giving very specific advice on pd medications. everyone is different and the consequences of your giving the wrong advice and causing someone harm or to sacrifice quality of life because of some future side affects that may or may not occur can be significant.
i know many people that have done well for over 10 years on sinemet/stalevo and many that have done poorly on agonists and were afraid to even try sinemet and are much more disabled than they need to be. the more one knows about pd meds the better and thie personal experiences told on this board are valuable but were're not doctors, we don't know the medical history of the person involved or even if it is posted know if it's accurrate. i'm all for making suggestions but i am totally object to anyone judging sinemet based only on their bad experience with a doctor more than the drug itself it seems.

agonists are not recommended for people over 70 and when asked which would you prefer, dysknesias or stopping sinemet and taking an agonist, the majority said they would stay with sinemet since it was still more effective.

keep in mind it's not the l-dopa that directly causes the dyskinesias but the uneven supply to the brain inherent in pills. dyskinesias are significantly reduced using the intestinal l-dopa gel delivered by the duodopa pump. in fact, patients usually request more l-dopa when on the pump than on the pill.
since most of us will never get that pump nor want it, what good is knowing this? imho, it might indicate some docs need to do a better job managing sinemet and patients need to be as well informed as they can be about what "normal" outcomes are.

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.

I did not give advice on specific meds. If that was not clear then allow me to set it straight. I mean only to strongly encourage people to educate themselves and make decisions from an educated point of view. Most people do not know that CL has a short effective life. I argued against taking for several years with my doctors. They told me a lot of misinformation and I ended up surrendering because I felt so bad.

I did not tell people not to take it nor did I disparage it. It is not my intent to tell people not to take anything. My only desire as I said was to encourage people to learn and make the best decision for themselves and their unique situations.

You are incorrect in one thing. CL does cause dyskinesia. My doc told me this when I voiced concerns about starting CL. She asked which was worse PD or the dyskinesia? As it turned out the dyskinesia was worse. I still get it when I take more CL than I need. It is also how I gauge it is time to reduce the amount of CL I take. I have no other way of developing DK but for CL since I do no have PD. It also caused lead pipe dystonia in me. As you correctly pointed out we are all different which is why I really wanted to point out I am different and people shouldn't use me as an example.

There is a video online for the Rocky Mountain movement disorder center where one of their DBS patients describes that his surgery stopped the dyskinesia because he could stop taking CL. It did not stop the rest of his symptoms so he was somewhat disappointed. I can try to find the vid if you are interested. He was in his 20's when diagnosed and had dbs in 2009 or 2010. His doc was Rajeev Kumar in Denver. He published a before and after video and just wanted to go fly fishing in an alpine lake in CO where he lived. You might be able to search for it with that info.

Hopefully I made that more clear. I certainly don't presume to tell people what to do. My only desire is to help and learn.

PS It never occurred to me that people would make their medical decisions based on some stranger on a forum. This is what it is...simply a place to get ideas. Everyone on this forum has opinions, experiences etc. Give people some credit.

All of you saying I am giving specific advice put ur glasses on. All I said was educate and make UR OWN DECISIONS! Hello!! Can you read?

why would they be asking questions here other than to get info for making a decision? if they had access to a health practioner they were happy with why would they be asking questions here, boredom?

i guess we disagree about your giving advice when you say someone should avoid sinemet as their first drug and then as far as i can tell further try to discourage anyone from taking it with statements such as "I've spent the last 3 years trying to get off sinemet. It's been no picnic and the price has been high".

anyone can post here but you were offering an opinion on the best way to treat a newly diagnosed pd'er which is an agonist and that's not always the case, there's much more to it than that. age, tremor, OCS tendencies, i know a number of pd'ers that absolutely hate agonists.

and the worst is, anyone reading a new post of yours for the first time likely assumes you have pd and you don't, think about that.

*admin edit*

I disagree about the happy with practitioner bit. I have a doc I'm quite happy with and still ask questions of many people. Do you get your info ONLY FROM ONE SOURCE? No! My doc doesn't "have" pd so there are many perspectives he can't speak to. I also take into account the sources for my info and don't blindly plunge ahead changing meds to suit the post of the day. To insinuate this would happen is ridiculous. Your opinion is different not better, not worse. I have never criticized someone else's opinion or experience because I don't feel the need to do so nor am I a doctor. *admin edit*

What you are saying is don't recount your opinion or experience because I disagree. You are wrong. People aren't idiots and who appointed you hall monitor over the poor idiot newly dxers? They are not idiots you know, they are intelligent adults.

Just like none of us claim to be doctors. I never recommended agonists to treat newly diagnosed. All i recommended was EDUCATE urself. That's IT! I did echo what most practitioners and researchers already clearly acknowledge as fact. Sinemet has a given short effective life in general for most people. After which the side effects increase and it's efficacy decreases resulting in hard off and on periods with increased time taken. Use it when YOU deem appropriate not when some hall monitor thinks you should hear it.

If everyone believes that anonymous strangers on the internet will change people's life choices for the worst only then you must think very little of people in general. The opinions I offered were clearly stated as opinions and personal experience and I clearly state in each post I don't have PD. Your statements and facts are wrong.

Many of you have made incorrect statements about the drugs and I have not. I have been very careful to say in MY experience and to give accredited sources where I quoted something. The fact remains that CL DOES cause dyskinesia and dystonia. I gave source for that as well. The person that said it did not was wrong.

You guys need to chill out and quit trying to control other people's differences-embrace difference. It is that difference that allows modern society and you might just learn something. Who doesn't watch medical tv shows where loved ones scour the internet for answers then take that to the doctors. Rare disorders are found and cured etc. Who says you are right? Nobody can.

Statistically several of you probably don't have PD and will never know. Chicken little lives on. It is sad. Stop asking me to say only your approved speak, I have my own opinion and I don't do so to anyone else. I'll say what my experience has been as it actually happened.