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Deborah, i agree with you. I have taken my mother to numerous doctors now and they are still "not certain" this PD, but have ruled out most everything else. what is a person supposed to do? it worries me so much. paula ----- Original Message ----- From: "Deborah Setzer" <[log in to unmask]> To: <[log in to unmask]> Sent: Monday, September 02, 2002 8:35 AM Subject: The importance of PET scans, pt. 1 > Tom Berdine, founder of YOPD.org wrote Dr. Leiberman about PET scans. I was > less than impressed with the Dr.'s response. Here is the letter and > question that I posed to him today. > > Hugs, > Deborah aka Tenacity > ------------------------------------------------------------ > Dr. Leiberman, > > I am responding to two letters posted by a Mr. Tom Berdine on Aug. 31, > 2002 about PET scans. I am not a doctor but: > > 1. "if a specialist trained in pd cannot be certain of the diagnosis a pet > scan may help aside from this i see no role for them certainly no role to > justify their cost." > > I got a diagnosis from Dr. Levesque in L.A., A very respected and kind > neurosurgeon. Below is his results of my 2.5 hour office visit. I have > eliminated page 1 & 2 as they were not the important focus of this point. > Page 3 is included to show his "trained" opinion as to my diagnosis. Know in > advance, Dr. Levesque is not the only highly public MDS that I have seen. > From your list of MDS specialists on your site... I have seen 7 of them and > all had basically the same conclusion as Dr. Levesque. > > 2. "pet scans a limited usefulness in pd" > > PET scans having been around for over 15 years have been instrumental in the > determination of PD and surgery for PD from one of our very public PD > spokesmen. If celebrities get it before surgery, why shouldn't the PWP's? > Are the less famous. less deserving of conclusive proof prior to invasive > surgery? > > 3. "given the escalating cost of medicine, what we do not need is 50,000 > newly diagnosed pd patients having 3,000 dollar pet scans this is a cost of > 500,000,000 million dollars this sum if we had it would tell us what causes > pd" > > While we DO need funding to finding the cause and the cure ASAP, what does > having a PET scan have to do with that? Aren't PWP's subjected to many > tests that cost well more than this to determine what they "don't" have? > > I have researched PET scans in various locations here in the US and have > found, on average, F-DOPA and FDG PET scans cost $2100 per test. MRI's, the > test that almost all PWP's undergo as "routine" cost between $1600 and $1800 > per test and usually are conducted on a yearly basis. Not to mention CT > scans, blood work, office visits, etc. > > PD medications, if one is fortunate enough to have insurance, costs on > average $100 - $200 per month per PWP. This has left many, not all, with PD > in the terrible predicament of choosing between food and medication. My > personal out of pocket expenses for medication was $360 per month for over 3 > years. > > The cost of my DBS was $34,000.00..... The cost of my staph infection in the > brain due to nonsercomal infection was another $39,000.00. The cost of my > intensive care stay due to reaction of medications used to treat my staph > infection was another $29,000.00. I have had 2 more hospitalizations b/c of > problems resulting directly from the mis-diagnosis by learned MDS's which > resulted in my having the DBS to begin with. > > If you look at the expenses that I personally along with my husband have > shelled out, now knowing thanks to the F-DOPA and FDG PET scans that I do > not have PD or a PD+ disorder, can you still recommend NOT having the test? > How many others suffer needlessly or should be told that no answer is > available until autopsy when this simply is not true? What is the cost of > peace of mind? > > With all of this in mind, can you still say that the $500 cost difference, > on average, is worth NOT having a F-DOPA PET scan? Please do not tell me > that I am the exception. Using your numbers, "90% of the time a neurologist > trained in pd can make the diagnose with accuracy as verified by post mortem > examination and pet scans are not necessary" IF 10% of patients are > misdiagnosed and found NOT to have PD upon autopsy.... what is the $ amount > that is spent caring for these people? Medications, doctors expenses, > hospitalizations, emotional derailment, complications, surgeries that are > suppose to help, durable medical equipment, employment loss, etc. Surely > you cannot justify this when a definitative test is available. > > In giving recommendations to those newly diagnosed and the old "pro's" with > PD and PD+ disorders, wouldn't the bottom line be much more cost effective > dollar wise and emotional wise if the MRI's were put aside as the old way of > doing things and the PET scans became the new norm? > > And, several insurance companies DO pay for PET scans. CIGNA does, Blue > Cross/Blue Shield does, and I have been told that Medicaid in CA does. If > we as a group would have known that this test does exist, wouldn't lobbying > our insurance companies with these facts be far less costly than continuing > to pay for doing things the "traditional" way. > > I have been to Washington D.C., have lobbied heart and soul for over 3 years > for research and $ to find the cause and find the cure but I am appalled > that those who suffer with these diseases have been cruely mis-informed that > autopsy is the only thing that will provide an answer. Why provide those > suffering with a second class ticket when a first class ticket is available. > > I apologise if I have offended you. I have nothing but the utmost respect > for you and have followed your advice for over 3 years. But, on the point > of PET scans, I cannot disagree with you any more passionatly that I can > stop passionatly fighting for a cure for those that do suffer. > > Sincerely, > Deborah L. Setzer, M.A. > "Former PWP with MSA" > > > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: http://messenger.msn.com > > ---------------------------------------------------------------------- > 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