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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