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

Wednesday, October 28, 2020

my story revisited #63-amyvid


that scan below with the red stuff on it is an amyvid pet acan 
the red stuff is amyloid
if you have alzheimers you will have that red stuff show up on your amyvid pet scan
if you dont have that red stuff show up on your amyvid pet scan then your memory loss is not due to alzheimers

in 2012 the amyvid had just came out
i had one in the adni 2 study and had two of them in the biogen aducanumab study
the one in the adni 2 study i didnt get the results of it
the first one in the biogen aducanumab study i got the results of it
it was positive
which means
i have alzheimers when you put together my clinical history as described below
if it had been negative i would not have been accepted in the aducanumab study

in 2012 it wasnt being used in private practice
now in 2020 it is
when you have your workup for memory loss and if its needed to make the diagnosis then an amyvid pet scan can be done on you
you still have to pay for it unless of course like me you get them free in a research study

as i have written before in 2020 you can definitely find out if you have alzheimers disease if you have memory loss

when i wrote this blog 8 years ago i was planning on having an amyvid pet scan and just pay for it
i found out if i had one then some of the upcoming treatment studies would omit me if i had a recent amyvid pet scan so i decided not to do it

it would be about 4 years later before i finally got one that i could get the results of it

they now have a pet scan that looks at just the tau protein in the brain 
the tau protein tangles show up later after the amyloid accumulates

my guess is that both of these will be used one day in the workup of memory loss

here is the alzheimers associations statement on the new fda approval
of the florbetapir pet scan amyvid by eli lilly

i wrote a blog on this recently
their statement i totally agree with
its a beginning for diagnostic tests that may help define the
cause of a persons dementia

for me
i have short term memory loss showed on multiple neuropsych exams
i had a normal evaluation two years before they became abnormal
i have normal labs looking for other causes
i have had 3 normal mris
i have had one normal glucose metabolism pet scan
i have a strong family history of alzheimers-mother father brother and
distant relatives
i carry the apoe 4 double allele gene thats associated with an increased
chance of developing alzheimers disease
i have a borderline spinal fluid analysis for tau protein and beta amyloid

i have had a beta amyloid pet scan like the amyvid last year and will have
one next year but i cant get those results as they are part of the
alzheimers disease neuroimaging initiative adni-2

if i had the amyvid beta amyloid pet scan done and it was completely
negative them there would be some reassurance that what i have
is not due to alzheimers
if the scan is positive for beta amyloid plaques then it would be more
information added to the other that says that i probably have
alzheimers disease

so will i have the test
i plan on doing it as i want to know as much as i can about whats
going on with me so ill know where im at

not everyone will benefit as well as i will to have this test done
estimated cost $6600 non covered by insurance
i have not had the tau pet scan but if i were to enter a new alzheimers study i might get to have it done

fyi on november 6 2020 the fda will have a hearing to decide if they will proceed with the approval of the use of my drug biogens aducanumab in the treatment of alzheimers disease
if its approved it might be available next spring or summer for use

in two weeks i should find out the status of the adcuanumab study that i was in 
if it gets restarted i will start back my monthly infusions of this drug
so far i got 18 placebo infusions and 7 aducanumab infusions

so will it work 
im going to find out eventually

the organicgreen doctor

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