As I suspect many are. I can't be the only one. Dystonia is the third most common movement disorder. It is a primary symptom of over 50 disorders. Bradykinesia is a primary symptom of some 40 disorders or drug reactions, tremors have as many causes and types as there are imaginations to fill them it seems. Yet it seems the rubber stamp of PD diagnosis and the first rx for sinemet are written awfully fast for a disease (PD) with no definitive means of diagnosis (except after death). Even scans of any type only show areas of activity during certain stimuli-these are not uniquely diagnostic for PD. The resolution isn't there to see any physical abnormality-only the ability to say it looks like this scan from another person with this problem and has the same active areas during these stimuli.

Reading this forum leads me to believe there are many types of PD and many reactions to PD meds that make us all very unique. So again the rubber stamp treatment, application of scans, and diagnosis is inappropriate.

I do believe people can recover from being misdiagnosed. That is what I am currently trying to do and I am more disabled than when I had PD. The good news is that this is temporary. At least I hope, and think my brain is rediscovering how to make dopamine given some dyskinesias on much lower doses. That's part of how I judge timing to further reduce. One doc tells me a year or more to get off and another swears 1 week will do it. Recovery implies some kind of magic and serves to make many people dismiss it out of hand.

I'm a numbers kinda person though and I can't believe all those docs are right and never change diagnoses...I just don't BUY IT! That and I can't find a single doc with ANY experience getting people off sinemet. Not a single one of all the calls and contacts has returned a call or said yes yet. I'm in some kind of purgatory waiting for something to help.

The main reason I was told I had PD was my response to the drugs. That is the supposed big diagnostic tool. If that method takes a person w/o PD and makes them have either drug inflicted PD or mimic PD then the process is wrong. ALL of my symptoms were caused by sinemet including dystonia which I never had before L-dopa. So do I believe PD can be cured spontaneously? I'm not sure, I've seen my brother's RA go into remission and seen friends survive cancer. I beat cancer they said would have killed me; my dad beat cancer they said was incurable so I don't doubt the body and brain are capable of incredible things. Sometimes the right doc is all we need.

I think more people should be seen off meds (IF AND ONLY IF deemed safe by their doctor) to see if like me they don't show PD symptoms and have not progressed. I think we might have more "cures." I have a family friend also going thru a divorce that was "cured" of MS after her divorce. She never had it either. Stress is a very powerful demon.

I believe that statistically based only on the numbers above that 75% or more may be misdiagnosed and addicted to sinemet and/or inappropriately prescribed or prescribed too soon. It is a drug of last resort since it has a very short effective life span. The side effects are not L-dopa responsive and become permanent.

I have a big problem with docs prescribing it to younger and younger people. My dystonia from sinemet was so severe I couldn't move and was in more pain than I thought possible at a whopping dosage of 2300-2500 mg per day (which was by ALL my docs accounts grossly over prescribed for someone on it for only 5 years) for someone that could pass for normal most of the time. Now I'm on 600 a day and still decreasing and the dystonia is gone.

This is **** to get off of and very dangerous. I would much rather be comfortable than suffering for 7 months now of agonizing cramps, muscle tears, exacerbated tremor, chronic fatigue, confusion, inability to concentrate or carry through with even simple logic. You have to be VERY motivated to go through this. I don't know how much longer. One doc says 1-2 years and another says a week. I think somewhere in between is a better answer.