Hello, my name is Patti
I have just joined the site looking to see if others diagnosed with Parkinson's, question whether they have been misdiagnosed.
I am believing this now about my husband, he was dx'd at the age of 60 with Parkinsons and on treatment for 17 years. We have been making changes in his meds slowly doing away with one all together then lowered the Sinamet strength along with slowly cutting back on it, seems it is turning out for the better. I am not use to posting on a forum please excuse any boo boos. Thank you. Patti

Welcome! This may be the club you wish you didn't join. You'll find plenty of people here to help and support you. As far as medications just be careful what you are eliminating and that your husband's doctor knows what is happening. Again, welcome.

Welcome, Patti. If your husband has been receiving PD care from a neurologist for the past 17 yrs, I would say it is highly unlikely that he has been misdiagnosed. The doc(s) knows exactly what to look for as time goes by. Your husband's symptoms may "appear" to improve as he backs off certain meds, but this may simply be a temporary result of "not" taking the meds--if that makes any sense. Most every PD patient will or should take a brief "holiday" from taking sinemet, for example. I have had PD for about 17 yrs; onset of symptoms at age 34. I "feel" better for a few days when I take a 5-7 day break from the sinemet, but it is kind of risky business.

A member here, Harley, was dx'd with PD at age 27...she is now 54 and has been told she does NOT, repeat, NOT, have PD. She has gone 27 years, half of her entire life, taking PD meds and dealing with the side effects and going to neuros and all the joy that being labeled a PWP brings, to be told now, at age 54, everyone was wrong.

Harley is not alone, you would be surprised at the number of people who are misdx'd with PD. The "estimate" is 30-35%. I think with some of the newer tests that may come out, this will change, but there are a whole lotta folk out there right now living the PD nightmare who may not have to be. You can search this forum for Harley's posts, and this forum and the PD sites for stats on the approximate mis-dx rate. You can understand why it is so high when you realize that the only "definitive" test for PD is the finding of Lewy Bodies in the brain on autopsy. If they find them, you had PD and your dx is post-humously confirmed: if they do not find them, you were mis-dx'd (big consolation after you are gone). Complicating this is the fact that they find Lewy Bodies in the brains of people who never had a single symptom of PD....and that people who manifested PD very strongly have been found to not have Lewy Bodies in their brain at death.

I take all of this to mean that we still have no real idea of what we are dealing with

i'd be very surprised if the misdiagnosis rate was that high.

Needs Assessment Statement - National Parkinson Foundation
Sorry, can't copy the full link, but you can Google it via
parkinson *edit*

The most common figure I see is 30%, and the AAN conservatively says 20%. This breakdown referenced by Medscape is probably more accurate but still unacceptable, imo.

The diagnosis of PD can be challenging when based solely on clinical history and examination. A review of the literature has revealed misdiagnoses in 47% of cases diagnosed by general physicians in the community, in 25% of cases diagnosed by a general neurologist, and in 6%-8% of cases diagnosed by a neurologist specializing in movement disorders.[1]

The most current data is from 2006. No wonder our trials typically cannot meet endpoints.