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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