I was recently asked my point in mentioning my recent diagnosis of NOT having PD after 10 years as I struggle to get off sinemet. Below is my answer.

Statistically 1 in 4 of you reading my words dx'd with PD are misdiagnosed. That's right 25% of you. There may be nothing wrong with you or something much better treated appropriately. Who doesn't want a pass on PD? Nobody is going off l-dopa; I'm desperately searching. Does anyone like it?

The Michael J Fox Foundation for PD Reasearch says that about 25% of PD diagnoses are WRONG. http://www.fountia.com/conditions-mi...insons-disease. That's 200,000 people in the US with possibly no or benign disorders and many with dangerous orders better treated other ways. UK data supports this with up to half the 25% having essential tremor (NOT PD) and 16% having Alzheimer's. Then there are TIA's, MS, Strokes, toxin exposure all treated with very different meds and very possibly recoverable if treated correctly or fatal if not treated correctly. http://www.livestrong.com/article/20...as-parkinsons/

Then there is NPH
SYMPTOMS: The symptoms of NPH include gait disturbances ranging from a mild imbalance to an inability to walk or stand; mild dementia that includes loss of interest in daily activities and forgetfulness; and impairment in bladder control, ranging from urinary frequency and urgency to total loss of bladder control. (SOURCE: Barrow Neurological Institute).

Also Fragile X, Lyme www.endowmentmed.org/pdf/updatelyme.pdf, Alzheimer's and Lewy Body http://www.ncbi.nlm.nih.gov/pubmed/20963199, Post here from Stitcher http://neurotalk.psychcentral.com/thread16915.html,

The American Academy of Neurology says agrees with the MJFFPR, 200,000 of the 1million US PD suffers are mis-diagnosed. http://legacy.signonsandiego.com/new...1n3parkin.html

My criticism is that the philosophy for prescribing is flawed since the medical community admits this is a disease of exclusion (as discussed here on forum) yet it is rarely excluded. People aren't seen by their docs off meds. Once I was diagnosed I never saw a single doc off meds until the one that said I didn't have PD. Five more docs now back him up. I can't find a single doctor that knows how to get people off sinemet despite an extensive search.

The Cleveland Clinic which you discuss and Wilfrid Laurier University studies indicate sinemet and agonists are being prescribed too early since exercise works. You agree according to your post. See posts here about PD being a disease of exclusion http://neurotalk.psychcentral.com/thread114303.html Is anyone in a hurry to develop non-l-dopa responsive side effects like diskinesia, tardive dystonia, tardive dyskinesia (most of which become permanent).

John's Hopkins says Parkinson's Diagnosed:
"Persons are diagnosed based on the symptoms they have and the physical examination. There are no standard laboratory tests available although testing is often done to exclude other similar diseases. A significant improvement in symptoms related to taking the medication carbidopa/levodopa is helpful in making the diagnosis since all patients with Parkinson's Disease respond to this medication." A self-fulfilling PD diagnosis prophecy with no exclusionary process. Has anyone seen a doc off meds regularly to evaluate their progression or lack of?

EVERYBODY responds to l-dopa. The body seeks to maintain homeostasis when exposed to sinemet. I do not have PD but cannot stop sinemet cold turkey because I will die from NMS or DAWS. My body has reached homeostasis with this drug just as it would with chronic substance abuse. So now I must detox but nobody knows how. There are thousands of publications but no docs with experience in getting live people off sinemet and keeping them alive. Only dead stats.
http://emedicine.medscape.com/articl...overview#a0104

It is compared in many ways to high long term alcohol addiction (which has a very high mortality rate) or taking ecstasy in the way in which it alters the dopamine receptors in the brain. Can we recover from l-dopa damage? Will my brain ever accept my own dopamine again? I still don't know those answers. http://www.nida.nih.gov/pubs/teachin...Teaching4.html

The NIH says Repeated drug exposure also changes brain function. Positron emission tomography (PET) images show similar changes in brain dopamine receptors resulting from addiction to different substances. Dopamine D2 receptors are one of five types of receptors that bind dopamine in the brain. "Like cocaine and methamphetamines, dopamine agonists work by stimulating the reward pathways in the brain. For this reason, it makes sense that they would engender similar withdrawal symptoms, particularly in those with high cumulative drug exposure." Hence the struggle with DAWS and the addictive nature and permanent damage potential. (Source Weill Cornell Medical College)

Ecstasy users cannot recover their damage and many develop PD. Studies on ecstasy and alcohol show permanent damage, I doubt many people would choose this when taking l-dopa if they didn't need to be. My criticism is for the process of diagnosis and that doctors still don't know how l-dopa works. The diagnostic protocol is 25% wrong agreed by all major sources including the NIH, MJFF, and AAN and other countries. I resent being potentially being brain damaged because only 1 of 13 doctors followed protocol.

I criticize leaving the patient out of the process as in the video "From God to Guide" paula_w posted http://www.youtube.com/watch?v=LnDWt10Maf8 I did get a 2nd 3rd 4th... 12th opinion but only one doctor asked to see me off meds in 10 years and figured it out. Most of the questions I asked about "coincidences" in my own diagnosis were dismissed by my doctors and it turns out I was right.

You asked my point:
1. Symptoms for PD are hallmarks of over 100+ other disorders yet I can't find anyone save for one friend who was dx'd with MS and another diagnosed with Alzheimer's who didn't have it. Both of whom were medicated into having the symptoms of the diseases. Also illustrated in the video I mentioned to paula_w called Under Our Skins where Lyme is being diagnosed as PD and MS and is curable with antibiotics.
2. I count 39 drugs on one web site that cause PD. My medical history can add sinemet to that list.
3. The possible diagnoses are almost uncountable yet PD seems to be what is diagnosed most of the time for any tremor or slowness. 10% of dystonia is thought to be correctly diagnosed http://abcnews.go.com/2020/story?id=124044&page=1,
4. I don't think patients are educated properly about sinemet's dangers (NMS can occur spontaneously and it is addictive) and has short effective life 3-5 years, causes harder offs and Dystonia. Evidence in many posts here.
5. Doctors should be looking to patients not the other way around to find a cause/cure.
6. Maybe PD recovery is onto something-there is a cure if you don't have it.
7. Too many patients are married to their diagnosis.
8. Excessive stress can lead to or mimic PD, MS, Alzheimer's etc.
9. Sinemet caused all of my symptoms - should that be ignored?
10. Since finding this out I learned of many people over medicated for Alzheimer’s and many other diseases when they had Lyme, Dystonia, meningitis, stress, and other things http://neurotalk.psychcentral.com/thread151385.html

I hope people play a more active role in their treatment. If only one person finds they are misdiagnosed then I consider that a success. If this is a disease of exclusion why aren't there any exclusions documented?

Sorry I offended you. In my excitement to help what statistically has to be a large number of people I just think patients should play a more central role. This God-like doctor role seems backward to me. I see no need to get mad at someone trying to help. We are all entitled to an opinion without being attacked. I am well aware what living with PD is like. I did it for 10 years. I am also living proof some people should not have to do so. How is anyone able to judge or find wrong anyone else's feelings especially if they are trying to help.

I also still have the side effect of being manic from sinemet and tend to say too much without intending to. I don't like that but right now can't help it. If nothing else offering hope and alternatives seems a productive thing to do. I would rather know if there was a chance in this disease of exclusion for which I can find no docs with any experience taking people off sinemet. (hence no real exclusionary process) Does anyone know anybody that has been excluded?

I am darn lucky I can now take care of my parents when they need it instead of the other way around. My criticism is toward the provably flawed process that statistically 1 in 4 of you is reading has nothing wrong with you and is suffering as I was. Your families also suffer which is what I take greater exception to. I don't like my family suffering.

The misunderstanding was that I was criticizing sinemet. I was not. I'm criticizing the diagnostic protocol. Why is response to l-dopa the criteria for dx'ing PD when EVERYbody responds to it just like all drugs that cause NMS, DAWS, SS, etc.. like opiates, benzo's, alcohol, ecstasy, & all brain pleasure receptor affecting substances legal or not, that cause immense release of serotonin or dopamine.