in the UK, a Datscan is accurate enough to be treated as a dx by insurance companies.

Not perfect then but not that bad.

I had one and it turned out to be right, (damn), and the insurance company paid out.

Neil.

How can there be a definite diagnostic tool for PD, until they actually know more about it. As long as we are in the mindset of it being totally a thing of the substantia nigra, then there will not be, it will only diagnose a deficit in the SN. And it does that for people who have a finger waggle, and those who have full-blown symptoms, without differentiation. It is too narrow a definition, and what about all the people who are unwell, know that they have something major happening to them, and who are send off into the darkness again without a diagnosis, even though their condition looks like PD, and it is the closest match - they are not all PD plus or LBD........... and we know that there is something else, that there is damage that can occur in other bits of the brain that are not SN.......

There are lots of variations on the PD theme, neuros have been quietly noting them, and publishing studies on these differences for years, but the James Parsinson definition is still the standard....... I know of studies that identify sub-types, for instance among ethnic groups, older studies, yes, but not really noticed in the mass of other information, usually about drug related stuff. These quieter studies that give clues to a wider definition are by people who were actually looking at the patients, not the treatments.........

Lindy

Thanks, Neil. Well it's finally coming to the U.S. and I think it will be a good thing to have it finally available here. I wish I had had one after my initial dx.

Jean

Lindy, My husband & I are in 2 PD biomarkers studies. (my husband is a Control) Maybe they will eventually lead to identifying subtypes.

Jean

...one of our biggest hopes is ourselves and other PWPs like the ones here. We have ran up many blind alleys and will do so again, but by gawd we are trying harder than 90% of the neuros who treat us while patronizingly dismissing the sad little printouts that we try to get them to take seriously.

What they (and many PWP) don't realize, is that I may be a crackpot but I'm a darned intelligent and well educated crackpot. And, unlike any generation of crackpots before me, I've got the Net and access to a huge, unsorted jumble of data that has been gathering dust for decades and there are flecks of gold everywhere I look. Maybe we should get T-shirts saying "Not Yo' Mama's Crackpot!"

So, debate all you want, just keep your mind open and be ready to shift into discussion seamlessly as appropriate.

it's tough having any serious chronic disease. our healthcare system needs improvement, that's obvious. but doctors have a lot at risk if they recommend any supplement, drug or treatment not scientifically proven to be safe much less effective. in my humble opinion, first rule in offering any advice is "do no harm".

we have a very opportunistic legal profession.

I agree with you Soccertese. The legal profession is like a pararsite. Not only has it turned doctors into defensive uncaring people, who see patients as potential moneygrabbers [even tho they usually are not], they have taken the fun out of school recesses - when they get one. No dodgeball, etc.

i don't know how it is in other countries, but in the U.S. there is no such thing as an accident.

c'mon, recesses aren't fun anymore? tell me it ain't so? i sure see a lot of happy kids risking their lives on climbing structures and playing soccer at recess.

Are there schools there? lol or is it a public park or after school hours? grandson was in first grade and dismissal was at 2:20. His recess was at 1:20 - and they didn't always go outside for it.

Rick we are all crackpots but we try.
paula

Let's talk, when you're 11 years into this thing. Until then, blast away with your abrasive behaviour towards your fellow parkies, U know who WE are.