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"
> >
> >
> >
> >
> >
> > _________________________________________________________________
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> >
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