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 19, 2019

alzheimers news-does it make a difference

Image result for organicgreendoctor
the amyvid pet scan is pictured below
it is a pet scan where a radioactive material is given iv and binds in the brain to amyloid
now amyloid is believed to be the protein that accumulates in the brain leading to brain cell death
this is how alzheimers disease starts
later the tau protein found in brain cells unwinds to form tangles which also damages brain cells
this is the theory of what happens in alzheimers

the amyvid pet scan can identify this amyloid in the brain
if you have alzheimers your amyvid pet scan will be positive

an interesting aside here
to get into the biogen aducanumab study my amyvid pet scan had to be positive
my scan was positive starting the study
for those who received the aducanumab drug for at least a year their amyvid pet scan became either almost negative or negative when repeated a year later
i definitely know i got 7 months of the drug
i think i got 18 months of the drug and not the placebo in the double blind portion of the study
more than likely my amyvid pet scan is now negative
i do wonder how long it will take it to turn positive again since i am now off the study and the aducanumab
the study was abruptly discontinued a month ago much to the chagrin of all of us in the study as well as the researchers and family members and alzheimers advocates

so below
on the left is a negative scan
on the right is a positive scan
if you have alzheimers disease your scan will look like the one on the right
like my original scan would
now it would look more like the one on the left
in 2019 if you want to know as close to 100% if the memory loss you are having is alzheimers disease here is the testing that is done
the first 4 are usually covered by health insurance
the last 3 are usually not covered by health insurance
but if you do all of these
then folks youll know if you have it close to 100%

a history and exam looking for reasons for memory loss like uncontrolled hypertension cholesterol diabetes obesity inactivity depression anxiety drugs alcohol sleep apnea diet etc
labs like a blood count electrolytes kidney tests liver tests glucose thyroid levels vitamin b12
memory tests in the office and or a gold standard neuropsychological exam
an mri

then as of right now if you want to spend the money since insurance wont cover these next three usually

genetic tests for early onset alzheimers and late onset alzheimers
spinal fluid analysis for amyloid and tau
the amyvid pet scan remember if you have alzheimers it should be positive

for me
my blood pressure and cholesterol were not well controlled to the new standards
i had low vitamin b12
i had memory loss on my initial evaluations for 2-3 years
my mris are normal
i have the late onset gene the apoe 4 gene
i have positive spinal fluid for amyloid and tau
i have a positive amyvid pet scan but it may be negative now after i finished my study

i now know close to 100% what i have

now enter the ideas study
the imaging dementia evidence for amyloid scanning

the center for medicare and medicaid service or cms just did a study to determine if doing the amyvid pet scan would make a difference in the management and outcome of memory loss patients
remember as of right now there is no treatment or cure for this disease
its a progressive fatal disease that cant be stopped

neurologists and other specialists who do memory workups could refer patients with the diagnosis of either mild cognitive impairment or mild dementia  to certain centers to get the amyvid pet scans done at not cost to the patients
cost is around 5-10 thousand dollars if you had to pay for it

i tried to get into the study before i entered the biogen aducanumab study but was denied because at that time my memory tests had returned almost to normal

so i even got an order to get one and just pay for it myself but before i could get it done i was accepted into the aducanumab study
got one done
found out it was positive

so in the ideas study
they found that

11409 people entered the study
6971 had a positive amyvid pet scan

2860 folks had their diagnosis changed from alzheimers disease to a non alzheimers disease diagnosis
thats 25% found out they didnt have alzheimers disease

1201 had their diagnosis changed from non alzheimers dementia to alzheimers disease
ie they had a positive amyvid pet scan
thats 10% found out they had alzheimers disease

7018 had their treatments altered by having the amyvid pet scan done
thats 61% of those in the study

to me it seems to make a difference
for me as someone who has had four of these in the last 8 years now knowing as close to 100% as one can in 2019 that i have the disease
i am glad i really know where i stand on my diagnosis

i can be really sure now on what to expect and plan accordingly
enjoy every moment of every day
ive really thought a lot about this lately since rewriting my old alzheimers blogs and seeing and reading my thoughts over the last 8 years
i cant imagine being in the dark on my diagnosis and not knowing wtf was going on upstairs
now i know
now i can deal with it

i am sure thats how many of the folks in this ideas study feel
when we know even bad news and know for sure
then we can adapt and deal with

i say
medicare and medicaid just man up and pay for this scan
heck i see you paying for all kind of stuff that should rank in priority way below the amyvid pet scan

they claim since there is no treatment or cure for alzheimers disease it makes no sense to pay for the scan

im sure glad or hope they didnt approach some of the cancers that way that are now curable

just do the right thing

the organicgreen doctor

No comments:

Post a Comment