Pam>Re: Fw: Question about FDG PET

[Guest guest]

Looks great to me Pam, and sounds like a great idea.

I know that when the discord flies, I tend to fly with it -

away... :-)

This is especially true if I've had a bad regressive period.

I really like this group, and want to see it remain successful and

intensely involved in others' lives. I certainly don't want to feel

as I did recently, when I questioned even coming back here. I know I

need this group - probably more than any here need me :-)

And... please don't misuderstand... I know that discord will happen,

and I don't expect everyone to agree, just to see each others' points

of view (though, I know this will not always occur either).

Thanks for all you do.

> 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@n...

> 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