Harley,

OMG what a weight must be lifted off your shoulders! How long have you suffered with this diagnosis/misdiagnosis crap; had DBS that was horrid...no we know why. Another reason why meds were suboptimal too. This angers me so much because it was not necessary and should have been done years ago! PD steals enough on its own, and in your case doctors just aided and abetted. Had not one of them ever talked about a PET scan?!!??!

This should be a big eye opener for us all. Not is there only compelling evidence that we all have different ways of getting here; not one of us may even share the same etiology and subsequently the same diagnosis. Harley it looks like has a secondary Parkinsonism. We know there is a growing number of monogenetic findings meaning we get PD just with a mutation. It can also be a result of just exposure to manganese or carbon monoxide or that cleaning chemical reported recently here. After reading of the latest info there being a potential vascular component, I started thinking I was going to design my own battery of diagnostics with first step being to pay for a damn PET scan if it bankrupts me. The only reason we are given this label is because insurance companies do not want to pay for PET scans. It has everything to do in keeping us in the dark because they make much more money keeping us on pills or having unnecessary surgeries.

No wonder we all have different progressions; widely varying med responses; weird attacks of paralysis involving electrolytes, genetic mutations, h. pylori related Parkinsonism, many of us may have dopa responsive dystonia. In the end I may just end up back in the idiopathic group, but at least I'll have the peace of mind in knowing with more certainty...

This is also further proof that the diagnosis of idiopathic PD should not exist; we should be pegged with Parkinsonism until the medical community gets its act together. We are far too complacent and complicit in all this; it goes on because we let it. Did you ever have someone tell you that people treat you the way you let them treat you- same thing going on with the way are treated as patients. We should all be demanding PET scans before any diagnosis is delivered to us and insurance company.

Let us know how it goes! It sounds like finally you have some on the ball doctors who can help you.

Best,

Laura