my story revisited #60-amyvid the final answer

MY STORY REVISITED #60-AMYVID THE FINAL ANSWER 

a year and a half after i was diagnosed i had had all the diagnostic tests one could have to evaluate you for possible alzheimers
i had them all in the adni alzheimers research study i was in but i had to sign a waiver saying that i understand i would not see the results
so
i repeated them all outside of the research study except for the amyvid pet scan of the brain
the final diagnostic test i needed to be as sure as you could be that what i had was alzheimers disease

in the adni study i had two of them and never knew what they showed

i had arranged over the next few years to have the amyvid done twice but would have to pay out of pocket
i never had it done in the private world outside of research because four years later after i wrote this blog below i had one done for the biogen aducanumab study and got the results

i was accepted into that research study 
you dont get in the study unless your amyvid pet scan is positive

it was real surreal when the research director read me my results

that was the day i got my final answer
__________
04-13-2012
AMYVID THE FINAL ANSWER
amyvid
this is the test that ive been waiting for
it uses 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 in 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 late onset 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 maybe 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 piece that i want
___________
so today you can have labs memory tests mri scans genetic tests spinal fluid analysis for tau and amyloid
tau protein scans and the amyvid pet scans
these tests when completed on someone with memory loss will tell the patient if they have alzheimers disease

now we just need a treatment or cure for this disease

the organicgreen doctor