PERRY>Re: From Dr. Lieberman's List: Re F-DOPA PET SCAN

[Guest guest]

IS DR. ABE A POLITICIAN?

SORRY.

NO OFFENSE INTENDED, BUT HE NEVER SEEMED TO ANSWER THE QUESTION.

UNFORTUNATELY, WHEN IT COMES DOWN TO SPLITTING THE HAIRS OF THE PD 0R

PD-LIKE DISEASES - IT IS CRITICAL FOR SOME OF US TO KNOW.

I AM SOON TO HAVE 2 PET SCANS, AND MULTIPLE NEW MRIS. SURE HOPE IT'S

NOT A WASTE OF MONEY. I'VE BEEN ASSURED BY THOSE I TRUST, THAT IT IS

NOT.

I WOULD LIKE TO KNOW THOUGH... TO HEAR IT FROM ANOTHER SOURCE...

THAT THE PET SCANS CAN DEFINITIVELY STATE WHETHER I HAVE PD, OR A PD-

LIKE DISEASE - AND WHICH ONE I HAVE, IF SO...

TO ME, DR. ABE NEVER ANSWERED THAT QUESTION.

$3,000 COMPARED TO THE COST OF THE HOSPITALIZATIONS I'VE HAD IN THE

LAST YEAR, AND THE OTHER TESTS RUN - IS A LITERAL MERE PITTANCE - A

SMALL DROP IN THE BUCKET... AND... AS MY INTERNIST IS CONCERNED

WHETHER I'LL EVEN LIVE MUCH LONGER, WE'D ALL LIKE TO KNOW HERE - IF

WE CAN - JUST WHAT IS GOING ON.

I, LIKE THE PERSON WHO WROTE THE INITIAL LETTER TO THE DOC... HAD

BEEN LEAD TO BELIEVE THAT THE ONLY WAY TO KNOW IF IT WAS MSA WAS POST-

MORTUM (WHICH WOULDN'T DO ME ANY GOOD :-) BUT NOW I HEAR A LOT ABOUT

BEING ABLE TO KNOW - WITHOUT A DOUBT - VIA THE PET SCAN. IS

THAT " WITHOUT A DOUBT " THAT IT IS OR IS NOT PD - OR WILL THEY

ACTUALLY BE ABLE TO TELL ME WHAT FORM OF PD-LIKE DISORDER I HAVE IF I

DON'T HAVE PD (AND IT REALLY SEEMS, HIGHLY UNLIKELY THAT I HAVE PD -

BASED UPON PD'S OWN DIAGNOSTIC AIDS ON THEIR SITE).

SORRY FOR RAMBLING... BUT THIS HITS VERY CLOSE TO HOME FOR ME.

THANKS FOR ANY ADDITIONAL INFO YOU CAN GET. AND THANKS FOR POSTING

THIS - THOUGH I'M NOT SURE I GLEANED ANY REAL BENEFIT FROM IT - AS HE

SEEMED VERY ELUSIVE IN HIS RESPONSES.

PAUL

> >

> >

> > For your information, I pass along the message below *******,

from

> Dr.

> > Lieberman's " Ask the Doctor " list, since we have some familiarity

> with

> > Deborah's case. I do question Dr. L's arithmetic. I think 3,000 x

> 50,000 is

> > closer to $150 million - still a large sum of money. Maybe he

> included some

> > new PET machines in his figure at $2M a pop.

> >

> > Following the message below ************, I have also posted

after

> > ######### a follow up message from Dr. L's list.

> >

> > These two questions and answers do warrant serious thinking.

> >

> > *************

> >

> > Subject: F-DOPA PET SCAN

> > From: " Anonymous "

> > Date: Fri, 30 Aug 2002 15:19:56 -0400

> > X-Message-Number: 15

> >

> >

> > question

> >

> >

> > There is quite a stir througout the Parkinson's community, that

> being us

> > the Parkinson's patients and not the organizations, concerning

> initial

> > diagnosis and surgical produres such as DBS.

> >

> >

> > Many of us are told that the only " positive " way to diagnose

> Parkinson's

> > is via a brain autopsy

> >

> >

> > Recent events involving our dear friend Deborah Setzer is

prompting

> us,

> > the patients to demand a change in diagnosis as well as

> verification of

> > Parkinson's prior to surgeries such as DBS. Deborah was diagnosed

> nearly

> > 5 years ago, had DBS, took all the brain altering drugs, and

today

> she has

> > been told she never had Parkinson's and never should have had DBS

> without

> > the f-dopa brain scan prior.

> >

> >

> > My questions, and I believe I know the answers, are:

> >

> >

> > 1. " Prior to surgeries such as DBS, is a f-dopa scan recommended? "

> >

> >

> > 2. " Understanding the cost of a f-dopa pet scan is around $3000,

the

> > machne cost of $2million, the limited hospitals with this

machine,

> as well

> > as the limited pysicians trained to administer/read the results

of

> this

> > scan---would it not be beneficial to the Neurologist/MDS and the

> patient

> > to obtain this test even if travel may be involved??

> >

> >

> > 3. What percentage of accuracy does the f-dopa scan give?

> >

> >

> >

> > Thank you for your time,

> >

> >

> > Tom Berdine

> > Executive Director

> > Young Onset Parkinson's Association

> > www.yopa.org

> >

> >

> > Founder, www.youngparkinsons.com

> >

> >

> > answer

> > 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 '

> > given the escalating cost of medicine 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, and result in us having a

> cure'

> > and not needing expensive tests to diagnose pd

> > there will always be exceptional cases but

> > pet scans a limited usefullness in pd

> > abe lieberman

> > ------------------------------------------------------------------

--

> --

> >

> > ####################

> >

> > Subject: Re: F-DOPA PET SCAN

> > From: " Anonymous "

> > Date: Sat, 31 Aug 2002 15:18:28 -0700

> > X-Message-Number: 30

> >

> >

> > Could you please elaborate on your statement in the attached e-

> mail...

> >

> >

> > " ...pet scans a limited usefulness in pd "

> >

> >

> > How reliable and accurate are they? Does additional testing need

to

> occur?

> > Do they do a special " injection " of some sort which defines the

> diagnosis?

> > Thank you in advance for your expertise and assistance!

> >

> >

> > answer

> > 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

> > abe lieberman

> >

> >

> >

> > Sennewald Charlottesville, Virginia