I would have toughed it out and used other meds. I had no idea that levadopa had such a short effective lifetime (generally 3-5 years). The doctor that prescribed it to me was not the first that recommended I take it. I was resistant to taking it for many years after reading much about diskinesia and problems with starting it too early. She asked what could be worse the PD symptoms or the diskinesia I was worried about. In my case the dyskinesia was much worse than the PD. I now know I should have gone with my gut and research and waited until there was no other recourse.

As a result of taking L-dopa I spent hours vomiting, spinning, snapping my neck and back (which are my original disability), hours unable to talk or communicate, hours unable to sit and be still, confusion, inability to apply logic to simple situations, worse insomnia, and what I believe was full fledged addiction to this drug. The same dose every day could produce Dystonia one day and diskinesia the next and hold me prisoner for 3-8 hours. I had one doctor insisting I needed immediate DBS or an L-dopa pump as immediate surgical intervention. He also said I would be in a nursing home by age 52.

Up until a few months ago when I found out I don't have PD and that my symptoms were all caused by sinemet I even more strongly feel levadopa is not an appropriate first line treatment. It has a place but I think it is over prescribed and prescribed far too soon for people desperately and understandably looking to get some normalcy of function back. It does do a good job of doing that but at too high a price. I think it makes Dystonia worse faster (or in my case created severe lead pipe Dystonia). I don't know if the way I was overdosed caused the hard offs, if my body's response caused them, or if after 5 years I suffered the inevitable loss of L-dopa efficacy.

Regardless of whether I have PD or not I would have and should have waited. Given what that drug does to a healthy individual and reading what how people on this forum are being prescribed and dosed I believe many of their symptoms and offs may be caused by doctors prescribing too much without understanding how the medication works.

If this drug is our last line of defense but has a very short window of efficacy we should be using it as such. It seems as if doctors are now using it as a first drug and augmenting it until the doses are incredibly high. I am also quite alarmed that nobody I can find ever receives the news that they have been misdiagnosed. With Dystonia and bradykinenesia being the two big things doctors seem to be using to diagnose PD the stats just don't match. Dystonia and bradykinesia are symptoms of over 100 diseases or disorders. Numbers alone say that ALL of these cases CAN'T be PD.

In my search to get off this medication and the deadly risks that carries I can't find a single doctor with experience in getting people off L-dopa. Logic follows that people aren't being taken off. It makes me wonder how many people are being misdiagnosed and being disabled very early by this drug. We keep hearing that EOPD is much more devastating and progresses faster. It seems that too early or overdosing L-dopa could be a big reason EOPD is worse.

A friend that has a son with Lyme recommended the video “Under our Skin”. All of my symptoms could also be due to Lyme and I did have meningitis of undetermined origin about the same time I was diagnosed with PD and spinal surgery. You can rent it on Amazon or it's on the watch instantly part of Netflix if you are a member. You can join Netflix free for a month if you are not a member and have unlimited instant watch video. Don't try and watch it free (there are many links with viruses that offer the video). Just pay to rent it or do Netflix and be safe. There is also an episode of Mystery Diagnosis that covers Lyme.

Not that Lyme is the answer. Just that there are MANY answers but nobody ever gets different answers. There are many types of Dystonia and many different types of bradykinesia. None of this was ever discussed with me, only PD. My symptoms in retrospect were atypical for PD but more than 10 neuros fell right in with the diagnosis without question. I think this should give the PWP community reason to pause and second and third opinions.

PD diagnoses destroy careers, marriages, and lives. Before taking L-dopa I think we should be asking what else do you have to offer first. If PD diagnoses are made partially based on the reaction to medication then why is it always this medication. It's potentially fatal to stop taking once you start and it's been torture for me trying to stop. L-dopa seems to be a self-fulfilling prophecy. I think if more people waited to see if they progressed withOUT L-dopa there might be a lot more re-diagnosing than there presently is. Right now there apparently is NO re-diagnosing.

I was not pleased with the way it handled my side effects. It seemed to make me much worse. Now in retrospect since it caused all of my side effects I think it was the wrong decision for me to make regardless of my diagnosis. There are so many safer drugs we can use or try before we go to this drug. There is a risk of NMS (neuro malignant syndrome) just from taking the drug (not just from stopping it). It can occur spontaneously. Out of all the classes of drugs that help with PD it seems fewer and fewer people try them before going full on ldopa. This seems very backward to me.

Frankly I think a great deal of severe dystonia is caused by ldopa. It was for me. Now that I've tapered down a lot I no longer have dystonia or dyskinesia. Stopping this drug can be fatal, cause organ damage, is extremely painful, and clearly not understood in my experience. L-dopa can be a wonderful drug for some patients but early onset or early in the disease I think it's a mistake. As a patient community we should be asking harder questions of these doctors that prescribe so soon. We should also not be so desperate to be normal that we lose sight of the ramifications of our decisions and do the research.