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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