i learn so much here. all the info i get here leads me to alot of questioning. i wonder why my neurologist said that a pet scan would not be helpful. i plan to ask him at the next visit. if many folks are misdiagnosed, it makes sense to me that effective treatment needs to be tailored to the correct diagnosis. i would hate to be diagnosed as not having classic PD after i'm dead. also, is the reason pders are "like snowflakes" referring to our different symptoms & med response because we all have different diseases. How the heck can research & drug trials be accurate if the participants have all different illnesses that look similiar but are not one disease. just asking.

Some really good questions. The research one just really gets to me. Over ten years ago they halted a huge NiH sponsored trial on toxicity of levodopa. Why? they discovered that a good statistically significant number of participants had normal dopa scans? Yet they all responded to Sinemet. go figure. Many of that group had Dopa Responsive Dystonia.

Best part is that researchers still do not routinely scan. How can there be any real measurement at all?

Yes we do all have different pathways that converge in one place only it seems that is we all have same cluster of symptoms and in the 21st century apparently that is all the requirement necessary calling something a disease? I suspect if they ever bothered to really test for anything the number of Idiopathic cases would get smaller and smaller.

Based on all that I have learned is that we all have an auto immune reaction gone amok with genetics, microbial pathogins, or toxins as main trigger and that PD is the consequence of this or a mixture of these three things. So really this is not rocket science. How difficult can it be to run a series of tests for each of these three main things? oops four things there is also vascular PD.

I am getting to the point where i am going to start devising my own battery of tests. I am tired of hearing how I should be constipated, have impaired olfactory function, and that I should act out my dreams. These are considered bio markers? I have not one of these so-called universal signs.

What further insults our intelligence is that an insurance company will not support DATscans as part of diagnosis because the dinosaurs of the American Assn Neurology says they don't need them despite their 30% error rate. I think the overall rate for misdiagnosis rated is like 3- 5 % and doctors have been called out for not taking full advantage of diagnostic materials that are readily available to them. I guess due to a combo of ego and conformity we are left always wondering...

Yet, they will pay for a scratch and sniff test to differentiate PD from PSP or MSA. That is simply crazy. We have no choice it seems, right? The establishment controls our lives essentially the minute we leave the examining room. I guess I should just let it all go and get on with living life but how can I when this hits in the solar plexus not to mention how it alters the lives of our loved ones.

Well, sorry for the rant. I just get so frustrated that we seem to have no other recourse other than to vent.

Laura

at the insistence of my Neuro to confirm the clinical diagnosis.

He said it would be needed to support any dealings with employers/insurance companies, etc to confirm the PD dx. I was 40 years old at dx and my age might present problems without a supporting scan.

I had the scan, it was positive and I have not (to date), had any problems over the dx with employers/insurance companies, etc.

Hope this helps,
Neil.