welcome to the organic green doctor blog

i am a family physician who was diagnosed with
early mild cognitive impairment(mci) amnestic type on december 21, 2010
this is a precursor to alzheimers disease
because of this diagnosis i have opted to stop practicing medicine
this blog will be about my journey with this disease
please feel free to follow me along this path
i will continue blogging on organic gardening, green living,
solar power, rainwater collection, and healthy living
i will blog on these plus other things noted to be interesting

Friday, April 13, 2012

amyvid the final answer

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

2 comments:

  1. 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.
    We're hoping/praying for the absolute best for you!

    ReplyDelete
  2. amber
    thanks 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

    ReplyDelete