Fw: Question about FDG PET

[Guest guest]

Maybe we should try to adopt a policy on this list of not confronting

patients to explain themselves about new procedures? I think in the long

run it's much better to go to the medical experts and have them comment.

This has worked for us well in the past.

I'm awaiting a response to the following note sent to:

Herscovitch, MD - Section Chief

Positron Emission Tomography Department (PET)

Warren Grant Magnuson Clinical Center (CC)

National Institutes of Health (NIH)

Building 10, Room 1C401

10 Center Drive, MSC-1180

Bethesda, land 20892-1180

herscovitch@...

http://www.cc.nih.gov/pet/

Regards,

Pam

Question about FDG PET

> Hello Dr. Herscovitch,

>

> I'm the moderator of the online support group from Multiple System

> Atrophy(Shy-Drager Syndrome). I'm not a medical professional but I try

my

> best to provide factual information to our group which is why I need your

> help.

>

> A member of our group previously diagnosed with PD and then more recently

> with MSA underwent an FDG PET scan at Long Island Hospital and was

> told it showed conclusively she did not have Parkinson's or any of the

> Parkinson

> Plus disorders including MSA. They could not give her any further

diagnosis

> however.

> She does have all the classic symptoms of MSA and the doctors at Long

Island

> have told her if not for the FDG PET they would still diagnose her MSA on

> clinical grounds.

>

> I know you can't comment on this case in particular but I'd like to know

if

> you have any

> information on exactly what an FDG PET can and cannot show? Is it

correct

> that this scan can conclusively rule out MSA? Many of our members are now

> questioning their MSA diagnosis and are wondering should they now go back

to

> their doctors and insist on an FDG PET scan as well.

>

> Any help you can give would be appreciated.

> Thanks,

> Pam

> http://groups.yahoo.com/group/shydrager

[Guest guest]

Pam:

Indirectly, you made a point in this post I meant to make in my earlier

one. We need those descriptions in lay language. It is hard for us

patients and care givers to take something technically complex we have only

an incomplete understanding of and convey it to others accurately -

especially since we all have a heavy emotional involvement in these things.

Once again, you are on the money.

I for one appreciate your providing all the support you do for the list.

Message: 13

Date: Tue, 10 Sep 2002 13:09:25 -0300

Subject: Fw: Question about FDG PET

Maybe we should try to adopt a policy on this list of not confronting

patients to explain themselves about new procedures? I think in the long

run it's much better to go to the medical experts and have them comment.

This has worked for us well in the past.

I'm awaiting a response to the following note sent to:

Herscovitch, MD - Section Chief

Positron Emission Tomography Department (PET)

Warren Grant Magnuson Clinical Center (CC)

National Institutes of Health (NIH)

Building 10, Room 1C401

10 Center Drive, MSC-1180

Bethesda, land 20892-1180

herscovitch@...

http://www.cc.nih.gov/pet/

Regards,

Pam

Sennewald Charlottesville, Virginia

[Guest guest]

Thanks .

Fw: Question about FDG PET

Pam:

Indirectly, you made a point in this post I meant to make in my earlier

one. We need those descriptions in lay language. It is hard for us

patients and care givers to take something technically complex we have only

an incomplete understanding of and convey it to others accurately -

especially since we all have a heavy emotional involvement in these things.

Once again, you are on the money.

I for one appreciate your providing all the support you do for the list.

[Guest guest]

Pam,

If the data does comes in technical language, I'll be glad to use my little

knowledge to translate it into plain English. Remember I said " I'll Try " .

This is a new area in medicine, and, it takes a while to get the vernacular

straight.

God Bless,

Judy & Jim Stark

Fw: Question about FDG PET

>

>

> Pam:

>

> Indirectly, you made a point in this post I meant to make in my earlier

> one. We need those descriptions in lay language. It is hard for us

> patients and care givers to take something technically complex we have

only

> an incomplete understanding of and convey it to others accurately -

> especially since we all have a heavy emotional involvement in these

things.

>

> Once again, you are on the money.

>

> I for one appreciate your providing all the support you do for the list.

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>