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Tom, how do you locate a hospital that does the Pet Scan? Thank you Ervin McCarthy ----- Original Message ----- From: "Tom Berdine" <[log in to unmask]> To: <[log in to unmask]> Sent: Wednesday, September 04, 2002 2:59 AM Subject: The Great F-DOPA PET Scan Debate! > 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