AMYVID THE FINAL ANSWER
amyvid
this is the test that ive been waiting for
its florbetapir
a radioactive labeled chemical that when injected in the vein
attaches itself to that sucky sticky protein called beta amyloid
thought to be the culprit in alzheimers disease
if you have alzheimers then you have a lot of beta amyloid in
the brain
and when amyvid is injected and a pet scan is done
the beta amyloid will show up as a bright red area on the scan
the worse you have it the more red stuff you will have on your scan
if you are early in the process like i am then you will have some
beta amyloid showing up on the scan but not near as much
as someone with full blown alzheimers
well i guess its like being pregnant though
either you are or you arent
you got the big a or you dont
thats the answer im after
do i or dont i
theres no real treatment
so what difference does it make
experts are hesitant to recommend this test for people to have
obviously they are not in my shoes or the thousands of other
people and their families who are the same situation im in
i want to know so i know what the future really is
its like being told well maybe that mass is cancer but we have a test
that will make the diagnosis more certain but we dont recommend you
have it cuz this cancer is probably not treatable
i want the test i want the final answer
it the final piece to the puzzle
ive had this test a year ago
its part of the adni study
and i will have another one next year
the problem is i will not ever get the results of either one
its part of the deal of being in the study
the evidence is against me on this alzheimers thing
ive had all the tests you can have to be as sure as you can be
(remember theyll know for sure when i die and they autopsy my brain
but i wont know)
these are the tests ive had
lots of labs to rule out other causes
3 mris that are normal
numerous neuropsychological tests including a lengthy 8 hour one last year
that shows some short term memory loss
a lot of blood work that ill never see the results of
i had the apoe genotype done myself which was positive for the
apoe4 apoe4 genotype for alzheimers
a fdg pet scan a glucose metabolism test that shows a defect on pet scan
if there is a decrease glucose utilization in the brain-mines normal
another is scheduled next year
i know my beta amyloid in the spinal fluid and my tau protein levels in the
spinal fluid as i had these ran myself-these are not normal but are not
where you see them in alzheimers
they are borderline numbers
my results are not all abnormal but are what you see as the disease begins
to kick in early on-remember most people dont know they have the problem
but may be noticing subtle things like i do and others definitely dont know
theres a problem-my wife she doesnt notice anything yet
the missing piece to this puzzle is the beta amyloid pet scan
brand name amyvid
i want it
to know where im at
i will be first in line for the test
if my amyvid scan is positive it will look something like the
scan of alzheimers disease below but not as severe
all the red stuff is the beta amyloid-thats what alzheimers
looks like
if my amyvid scan is negative it will look like the elderly
(im not elderly) control-no red stuff
my younger brothers scan as he is more advanced and is in a
nursing home will look like this
i know the limitations of the test
but when put together with everything else
its the final peace that i want
the organicgreen doctor
I don't blame you at all for wanting to know. I don't know how you can stand not seeing ALL the test results for yourself throughout the study. Kudos to you for offering yourself to Med-Science like that.
ReplyDeleteWe're hoping/praying for the absolute best for you!
amber
ReplyDeletethanks for the comment
most people dont have access to the information i have on my status so im lucky i guess
soon soon this will all be available to everyone
not knowing is the worst i think
knowing allows planning and changes your approach to life
togd