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I had 2 PET scans. One was Flouradopa. The second was Glucose I took these
because the doctors at Mayo Clinic believe that I have somehing that mimicks
PD but it's not idiopathic PD - PD plus is a litle tougher than regular PD.
They were trying to fit it into one of the other categories like Shy Dragger,
Supranucleur (can't spell these ) etc. etc. So they took the two PET scans
and learned that the usual areas affected in PD weren't really affected as
far as the PET scan could tell. They found other areas affected, which have
had me scared to death for three years now. Due to their findings I'm no
longer a candidate for PD related surgeries, and doctors seem to hesitate
anytimee they try changing meds. I go through H_ LL with any change. But
although I put all the doctor together from the Muhammad Ali research Center
of excellance, the Mayo at Scottsdale and the Doc who did the scans at UCLA,
they still say they don't know for sure what it is They told me to wait two
years (it's been three). But now I can't get the insurance to cover it (last
time they paid a part of it.. it's ws almost 2,000 bucks a shot. Multiply
that times two  (flouradopa and glucose) plus the air flight tickets, the
hotel, etc etc and the ordeal of having to go off all PD meds for a day
before taking the pictures, it's super expensive in more ways than one. So
I'm saving my pennies hoping it won't be much longer. All they're going to
ccheck form is to see what direction this disease (Parkinsonism) is going. I
know for a fact it's pulling me downhill, but I want to learn ore. If my kids
ever get this sh_tty disease, maybe I can leave behind some detailed info
about my "condition" so they stand a better chance. Sorry I got so wordy.This
is a real sensitive issue for me (PET Scans).
Good Luck
Maryhelen