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thank you deborah, i will talk to my mother about it and check on insurance. hope you are doing better!!! paula ----- Original Message ----- From: "Deborah Setzer" <[log in to unmask]> To: <[log in to unmask]> Sent: Monday, September 02, 2002 1:43 PM Subject: Re: The importance of PET scans, pt. 1 > Paula, > > The only advice I have to give you is what I did for myself. Don't accept > the diagnosis unless the doctor can prove to you it is correct. Look what > has happened to me by following doctors orders. Can you travel with your > mother? Do you have insurance? If the answer to both is yes then I > STRONGLY suggest you make an appointment with Dr. Halprin at Long Island > Jewish Medical Center in Manhassat, NY. if you both really want to know for > sure. > > For me, the diagnosis that I received was not acceptable and I almost > bought into it. If you remember from my postings back in late June, I just > wanted to lay down and die. I was tired of the fight. I was tired of the > doctors. I was tired of the hospitalization and diagnostic procedures only > to tell me the same thing over and over. I had enough...period. It was my > husband who drug me kicking and screaming and bitching and moaning to LA and > NY. Look how this changed my life. You and your mom do not have to give up > simply because "several" neurologists haven't figured it out yet. > > Hugs and Warm Fuzzies, > Deborah > > > 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 > > > > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx > > ---------------------------------------------------------------------- > 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