[Conductor71]

Okay, here is a bit of research I unearthed over night. Why I am the least bit surprised, I don't know...

What happens if you poke a stick at it, it looks like PD, moves like PD, so gets treated like PD, but isn't PD at all? This just turned my world on edge. There is a condition related to the Fragile X-Ataxia Syndrome that have as a result of a genetic premutation what is described in medical literature as "indistiguishable from Idiopathic Parkinson's Disease".They have cardinal signs, they progress. I am thinking, well, they don't respond as well to levodopa. Nope, not the case. Not only do they respond to levodopa...they develop motor fluctuations and have dyskinesias! Yet, if you look at our brains side by side in a PET scan...no loss of striatal dopamine!!!! Yikes. I am sure this means that they must have a deficit elsewhere or the literature suggests dopa deficit at the synaptic level.

http://www.prd-journal.com/article/P...0148X/abstract

How long are we going to let insurance companies hold us hostage before we demand coverage for SPECT or PET scans upon diagnosis? It is outrageous to me that some weird ***** FMR1 genetic premutation can be found in ten people with a scan by excluding PD, yet supposedly they can't measure us? Scans are too experimental? They are used routinely in Europe for diagnostics, so I don't buy that. Truth is our insurers refuse to pay for the expense.Yet they will readily pay for an UPSIT scratch and sniff card? Last I heard, we hadn't even decided on biomarkers. Not to mention it is merely a helper clue. How is it we can claim to have the best medical care in the world when we have a young women in her thirties head to Mayo Clinic to be undiagnosed with PD and told "you have a serious neurological disorder of unknown origin"? That is our best shot? Still, she would have to pay for the PET scan herself.

This is where we are way off. Before we identify biomarkers for PD, shouldn't we have a solid biochemical test or visual measure of dopa levels as a basis for even establishing the disease in the first place? Yes, understand the fervor in catching the disease before motor symptoms appear, but the above finding tells me that researchers know jack all about any of this. I would like to see an effort to put into actually developing some definitive tests for us. Do they not see that they are messing seriously with lives here? The profound impact that this diagnosis has on us? We should all have a diagnosis of "probable PD"- we are being screwed, but do we have any other options?

Laura

[lurkingforacure]

Originally Posted by Conductor71

Okay, here is a bit of research I unearthed over night. Why I am the least bit surprised, I don't know...

What happens if you poke a stick at it, it looks like PD, moves like PD, so gets treated like PD, but isn't PD at all? This just turned my world on edge. There is a condition related to the Fragile X-Ataxia Syndrome that have as a result of a genetic premutation what is described in medical literature as "indistiguishable from Idiopathic Parkinson's Disease".They have cardinal signs, they progress. I am thinking, well, they don't respond as well to levodopa. Nope, not the case. Not only do they respond to levodopa...they develop motor fluctuations and have dyskinesias! Yet, if you look at our brains side by side in a PET scan...no loss of striatal dopamine!!!! Yikes. I am sure this means that they must have a deficit elsewhere or the literature suggests dopa deficit at the synaptic level.

http://www.prd-journal.com/article/P...0148X/abstract

How long are we going to let insurance companies hold us hostage before we demand coverage for SPECT or PET scans upon diagnosis? It is outrageous to me that some weird ***** FMR1 genetic premutation can be found in ten people with a scan by excluding PD, yet supposedly they can't measure us? Scans are too experimental? They are used routinely in Europe for diagnostics, so I don't buy that. Truth is our insurers refuse to pay for the expense.Yet they will readily pay for an UPSIT scratch and sniff card? Last I heard, we hadn't even decided on biomarkers. Not to mention it is merely a helper clue. How is it we can claim to have the best medical care in the world when we have a young women in her thirties head to Mayo Clinic to be undiagnosed with PD and told "you have a serious neurological disorder of unknown origin"? That is our best shot? Still, she would have to pay for the PET scan herself.

This is where we are way off. Before we identify biomarkers for PD, shouldn't we have a solid biochemical test or visual measure of dopa levels as a basis for even establishing the disease in the first place? Yes, understand the fervor in catching the disease before motor symptoms appear, but the above finding tells me that researchers know jack all about any of this. I would like to see an effort to put into actually developing some definitive tests for us. Do they not see that they are messing seriously with lives here? The profound impact that this diagnosis has on us? We should all have a diagnosis of "probable PD"- we are being screwed, but do we have any other options?

Laura

Laura, I read this week that GE has a PD test which primarily distinguishes ET from PD, it just got approved this week, I believe it is called the DATscan, not sure of spelling....you will love this, it has been in use in Europe for years, of course, but just now getting approved for use here. Sigh.

I personally believe in the power of boycott. Perhaps if patients refused to go on drugs until they had definitive proof that the really did have PD...? But that would just make those who really do have PD suffer.

I don't know how people change the current medical industry from being disease driven, where people are told they have a "disease" and migrated onto drugs for life (the ultimate goal, in case anyone hasn't been paying attention for the last twenty or so years) to one of cause-locating. But then, that would put a whoooooole lot of people out of work. I read the NHS is the SEVENTH largest employer in the world. That's damn scary.

[marciaj]

It just so happened I had a CT scan before I saw the neurologist (checking to make sure I didn't have cancer mets to the brain) and the neurologist was interested in seeing the results. I guess not too many diagnosed also have CT scans done. Not sure why he was even interested in it. All it showed was a small meningioma. I'd heard of the DATscan before.

[krugen68]

I had the CT scan and DATscan on Health Insurance, for the DATscan they inject you with radioactive iodine.

You're not supposed to cuddle babies for 24 hours

[Debi Brooks]

I have mentioned here before about the PPMI study sponsored by MJFF. http://www.michaeljfox.org/living_PPMI.cfm

PPMI uses DaT as part of the inclusion / exclusion criteria for study subjects. DaT will be used to "confirm" a physicians' "diagnosis" of PD. Use of DaT may become common in clinical studies--particularly those recruiting early-stage patients where diagnosis is particularly challenging--as it is critical to know that we are in fact studying and drawing conclusions based on data from PD patients, not subjects who have something that looks like PD.

We have been working with GE Healthcare (who has provided the ligand in-kind to the study) to get this up and running at all the PPMI sites in the US.

Debi