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Hi Tom and All, I've read all of these posts and thought about it a bit.... Perhaps it is not quite as simple as some might think... First... There are many "different" PET scans... I happen to reside near one of the pioneer (1980) PET scan sites - UBC, Vancouver, BC Canada... Over the past decade, as a volunteer in research studies, I've had several PET Scans at UBC including raclopride and F-Dopa. These scans were for research purposes in Parkinson's, not for diagnosis of my neurological movement disorder. The PET scan looks at metabolic activity or synaptic activity in the brain and the results of a PET scan may or may not show a pattern consistent with Parkinson's disease. Thus a PET scan might or might not rule out Parkinson's or might or might not identify a lesion or a tumour. To my layman's knowledge, PET scans do not definitively diagnose Parkinson's Disease but simply aid the professional in confirmation of his clinical observations. The real value in volunteering for PET scans is that when you die, and donate your brain to science, then the autopsy and the scans may add to the core scientific knowledge... (I have not had a scan using Fluoro-deoxy-glucose (FDG) as I believe that tracer is most commonly used to detect or evaluate injury or cancer.) This Table represents all of the radiotracers which are listed in our current edition of the North American PET Directory. http://www.snidd.org/petsearch.cfm You will note that if you click on a tracer used for Dopamine D1 Receptor; Dopamine D2 Receptor; Dopamine Metabolism; or Dopamine Transporter there are only a very few sites that perform these scans. The F-DOPA tracers are used to investigate basal ganglia function and to look at dopamine synthesis, dopaminergic binding, and reuptake in the striatum of the basal ganglia. They may be helpful in diagnosing or ruling out Parkinson's disease, dopa-responsive dystonia, striatal degeneration, and other disorders. The cost of volunteering for a PET scan in my case is just half a day of my time (sometimes a full day). I live within a 20 minute bus ride to the facility. The cost of travel to a select few PET sites and the purchase of a scan is probably prohibitive for the average Parkie. The other major disadvantage of PET scanning is that most hospitals simply do not have access to the equipment. (you need a cyclotron next door to produce the isotope...) Sooo... A PET scan may be desirable in some cases, but I must defer to the opinion(s) of the professionals... cheers ............. murray Reference: The University of British Columbia, Vancouver, British Columbia http://www.snidd.org/pet/cd_vancouver.pdf "How PET Works" http://www.epub.org.br/cm/n01/pet/petworks.htm "Positron Emission Tomography and Parkinson's Disease" http://www.parkinson.org/pet&pd.htm "Imaging the brain in Parkinson’s disease" http://www.bcma.org/BCMJ/April2001/PDImaging.asp "How Does a Physician Diagnose Parkinson's?" http://www3.health- center.com/body/illnesses/neurology/parkinson/about_parkinso/diagnosis .htm * * * On 4 Sep 2002 at 4:59, Tom Berdine wrote: > Hello everyone. It is not often that I post here but this subject > has become a personal project for me and I hope you will not mind > the .5 cents of input from a 35 year old young onset. > > First on the topic of Dr. Lieberman. My interpretation of his careful > response is one of non-endorsement. If he was to say "yes" this is a > good test, the community would go berserk and their would be lines of > PWP outside the national PET centers. > > The latest information I have read is 26% of all Parkinson's > diagnosis are incorrect. Deborah was one of the "lucky" ones to be > removed > from this group. Am I one of the other 25%, are you? 50,000 people > are diagnosed each year via clinical observation and l-dopa > responsivenss. Is it acceptable for 12,00 of them to be misdiagnosed? > > There are 20 other diseases that emmulate Parkinson's > symptoms, many are curable. My response to l-dopa was very > miniscule, yet it was the deciding factor. Of the 13 military > neuros/and one civilian MDS I have seen in two fun years not one ever > mentoned F-DOPA PET SCAN, yet ALL stated "there is no test that will > diagnose Parkinson's, except a BRAIN AUTOPSY. This brings > me back to the 25% misdiagnosed--when do you think the misdiagnosis > is caught? Post mortum autopsy of the brain. Speaking for myself that > is unacceptable, and I will encourage all PWP, specifically young > onset to actively pursue a F-DOPA scan (and some already have & had > the scan done). We must make this just as a common practice as the > MRI. > > We must educate our own doctors, neuros, and MDS's on F-DOPA--as well > as ourselves. We are talking a $2,100 scan vs a lifetime of > Parkinson's meds, DBS, P-otomy, F-otomy,and all the costs in between. > > We can not allow what happened to Deborah happen again. Not to you, > me, or the next 22year old who walks stiffly into a neuros office. We > must stand together on this issue........together we can win. > > > I offer the following information & more is on our boards at > HYPERLINK "www.youngparkinsons.com"www.youngparkinsons.com. There will > be a Dr. Keep from UNM speaking > on he F-DOPA scan at our Parkinson's Conference here in ALbuquerque > in October. > > > General PET Centers > HYPERLINK "http://www.aapm.org/pet/"http://www.aapm.org/pet/ > > PET Centers that use [F-18]Fluorodeoxyglucose (FDG) HYPERLINK > "http://www.snidd.org/petsearchresults.cfm?radiotracerid=38"http://www.s > nidd.org/petsearchresults.cfm?radiotracerid=38 > > NOTE: You have to copy/paste above link for it to work > > > source: HYPERLINK > "http://www.nuc.ucla.edu/html_docs/PET/petbrochure.pdf"http://www.nuc.uc > la.edu/html_docs/PET/petbrochure.pdf > > PET images of the brain will show if you have Parkinson's disease. A > labeled amino acid called F-DOPA is used with PET to see if your > brain has a deficiency in dopamine synthesis. If it doesn't, then you > do not suffer from Parkinson's, and your tremor will be treated > differently. > > P ET is safe. > > P ET replaces multiple medical testing procedures with a single exam. > > PET shows all the organ systems of the body with one image. > > P ET diagnoses disease often before it shows up on other tests. > > PET shows the progress of disease and how the body responds to > treatment. > > P ET reduces or eliminates ineffective or unnecessary surgical or > medical treatments > > and hospitalization. > > PET significantly reduces multiple medical costs and avoids needless > pain to the patient. > > People expect quality medical care at a reasonable cost and up-to- date > diagnosis and treatment. Medical costs are most expensive when > doctors are pursuing the origin of disease. As long as the disease is > unknown, more tests will be done and more costs will result. > > PET can effectively pinpoint the source of many of the most common > cancers, heart and neurological diseases, eliminating the need for > redundant tests and diagnostic surgical procedures. PE T is a > powerful, proven diagnostic imaging modality that displays the > biological basis of function in the organ systems of the human body > unobtainable through any other means. > > In a world of limited resources, PET saves time,saves money, and, > most importantly, saves lives. > > > Tom Berdine > HYPERLINK "www.youngparkinsons.com"www.youngparkinsons.com > HYPERLINK "www.yopa.org"www.yopa.org > > > Thomas Berdine > Executive Director > Young Onset Parkinson's Association > HYPERLINK "www.yopa.org"www.yopa.org > > Founder > YoungParkinsons.com > HYPERLINK "www.youngparkinsons.com"www.youngparkinsons.com > > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.384 / Virus Database: 216 - Release Date: 8/21/2002 > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn