I'm not criticizing sinemet at all I'm not sure where you got that idea. I didn't say anything bad about it. You're guessing that most people here didn't start with sinemet is wrong. Historic posts I read indicate many of us did start right away. I received great pressure to start immediately at age 41. http://neurotalk.psychcentral.com/sh...highlight=wait

As I explained I went a long with a lot due to an abusive marriage I tried too long to save. The incredible stress made a few pills here or there secondary to trying to get a separation and keep my insurance since I'm also disabled due to spinal injuries. I wasn't looking for sympathy so I didn't elaborate. I had to function to get out and I lost my primary caretaker.

I wasn't started with sinemet either so I don't see the relevance. I waited 6 years. Had a diminished sense of smell, micrographia, and very small adrenaline based tremor later (treated very well with inderal). I was taking sinemet within more than one doctor's guidelines. I was pressured to start sinemet and have DBS within a month to "protect" me. I declined sinemet until I got scared and beaten by ex and had to get out immed.

MJFFPD agrees with my conclusion. 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 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 and 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. It is compared in many ways to alcohol addiction or taking ecstasy in the way in which it alters the dopamine receptors in the brain. 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 20% 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 its 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.