Anyone know how accurate is l-dopa in diagnosing Parkinson's Disease? I remember a statistic of only 60% but i can't seem to find any info on it.

this is true. I was not sinemet responsive at my initial diagnosis. A MDS can usually diagnose you from observing your symptoms. A PET or SPECT scan will confirm your diagnosis. 60% seems about right to me.

Charlie

however Dat/Pet/Spect scan results are lights on an image and diagnosis based on interpretation of light is tricky and error prone.

To my knowledge primary diagnosis is based on clinical observation, ldopa responsiveness and Dat/pet/spect scans are supporting "tools".

l-dopa responsiveness is in the 70% - 80% range according to this study, (still leaves 20% to 30% non responsive though, a significant proportion).

http://cat.inist.fr/?aModele=afficheN&cpsidt=13807564

Neil.

I have to say I am still appalled at the primitive state of the diagnostic process for PD. Then when I tell people, you know, I'm still not really sure I have it, they give me pitying looks like poor thing, still in denial. But it sounds like there is a relatively huge margin of false positives.

Why don't they have a more stringent process for diagnosis before they start you on medication that you may never be able to get off of once you start them? I feel as if that old test, if you respond to the medication then you have it, is so self-serving. What about if they gave you a placebo initially and see if you responded to that??? And a brief 15-30 minute clinical exam - we all know how variable whatever our symptoms are can be.....there has got to be a better scientific method than this for making determinations, pronouncements, and treatments that will deeply and radically impact on people's lives.

It might be worth noting that not all of us respond to generic Sinemet - I have no reaction at all to the generic, but the "real stuff" is very helpful (and expensive). Leads me to wonder how many have been given the generic as a diagnostic tool....personally, all I had to do was walk down the hall and the MDS said "Parkinson's." I could have wished for something diagnostically more "scientific" seeming, but, as the MDS said, it beat ALS (the other diagnostic candidate in my case).

you should have shot the MDS in the leg and then said it beats being shot in the head

God, that sort of comment must have been so unhelpful at the time.

Neil.

Thanks for the understanding - yes, it was unhelpful. He also pointed out that, as I was only in my 50's, and they could "probably keep me going for 20 years" - I didn't have to worry about dying of Parkinson's as I would have plenty of time to die of something else. The man totally reduced me to hysterics. Since then, I have learned to by quite sarcastic with him and he enjoys that - anything that doesn't feel too much like real emotion I think is safe for him. I'm sure he sees a lot of misery and defends against it the best he can - even if it leaves the patients in shambles. Hard to be good at the medical mechanics and sensitive to people at the same time, I guess.

Thanks for your response.

clinical observation.

Interestingly in order to claim insurance policies, due to my age, I had to have a dat scan to support dx. This was acceptable to the insurance companies, ldopa responsiveness was not acceptable as a supporting "input" for insurance purposes.

Not sure if this varies from country to country or by company.

Neil.

Hmm, Neil, that is so interesting. I think that must not be the case in the States - or wasn't when I was diagnosed at the age of 32. I had a spinal tap and some other nasties to 'rule out other possibilities,' but then diagnosis was made on the basis of clinical observation, I guess, because they didn't start me on levodopa for a couple of years. This was a second opinion; what the first neurologist said she saw was "something that almost looks a little like early onset Parkinson's." But I had the feeling when I saw the second guy who 'confirmed' the diagnosis, that -well, it's like if you're a carpenter, the world is made of nails. He could only see me through the lens of his specialty. My diagnosis was questioned after about ten years, with the thought that maybe it was dopa-responsive dystonia or something else, but by then I was on levodopa, so they were like, well, we'll just leave her on it.

Yeah, Sasha, at the time of diagnosis, my doctor was SO depressing. He didn't even tell me that it was possible I could do well for a number of years. But it almost seemed like the suspicion of me having this diagnosis was like the inference of a bad reputation or something - just being suspected of it meant that you definitely had it. It was weird. And then two years later, when sinemet was brought into the picture, they said, "Well, you should just go ahead and take these because we're going to have a cure in five years anyway." That was close to 15 years ago or so.

These docs don't get it. My doc likes to say that things that work in rats don't necessarily work for people, i.e. don't get your hopes up on the basis of animal research - but he will, when pushed, say the cure will be here in 10 years. Guess he figures my brain will be too mushy by then to remember what I was told! How about a little hope and respect? I feel like the research animal when I see this fellow! I can't imagine being a really young person and listening to this guy...talk about getting the impression that your life is over. That's one way this board is so great - people obviously go on and live, find meaning and sometimes joy, even if encumbered by Parkinson's. Thanks to all for being here.