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, April 7, 2021

my story revisited #81-amyvid pet scan status then and now


the amyvid pet scan uses a radioactive drug that is given iv and is taken up in the brain wherever there is amyloid present
the photo below in the blog i wrote 8 years ago shows all the red amyloid in the amyvid pet scan in this patient with alzheimers disease

in the theory of alzheimers the amyloid starts to accumulate in the brain first to form plaques 
causes brain cells to die

this amyloid can be detected early on in the spinal fluid with a spinal tap or with an amyvid pet scan or now it can be detected early at least in research with a blood test

in 2013 when i wrote this blog the amyvid pet scan was used only in the research world
some neurologists were starting to order it in for the diagnostic work up for someone with memory loss
not many but a few were

i got two amyvid pet scans when i did my adni study in 2010 to 2014
later i got one after i was cleared to be in the biogen aducanumab in 2016
i got another one in 2017 as part of the biogen aducanumab study
i have never got to see my amyvid pet scans but i know my third one was positive for amyvid since i had to have a positive scan to enter the biogen aducanumab study 
the researchers told me it was positive

usually most of these are blind to the patient and they never see the results of these studies

i will get another one soon after i finish my initial reevaluation for restarting the biogen aducanumab study and restarting my monthly infusions
i wont get to see the result of this scan either

i accept that

this next scan will tell them if i have reaccumulated any more amyloid since i stopped my infusions almost two years ago
thanks to covid 19 these infusions have been delayed over a year now

in the original biogen aducanumab study the amyvid pet scans went from positive to negative after a year of infusions

i got 7 months of the infusions and 18 months of the sucky placebo
my scan although it may be positive now the amyloid should be diminished a lot

today in 2021 if you are undergoing a memory loss evaluation you may get an amyvid pet scan
first they do a history and physical then lab then memory testing then if indicated a mri then if  needed an amyvid pet scan
insurance and medicare do not pay for the amyvid pet scan 
it costs around $5,000+-

if my mother and younger brother had had one when they was diagnosed it would have been positive
my guess is that my dads would have been positive 

another acquaintance diagnosed a few years ago probably would have theirs positive 
their memory improved with adjustment of medications and improving their cardiac status and with exercise and diet adjustment
sometimes doing healthy things and maximizing your health can slow things down
i think thats why the acquaintance is better
its probably why i am better

also if you are prealzheimers ie you have no symptoms but you have amyloid in the brain your scan will be positive


the amvid pet scan is the pet scan that will highlight beta amyloid
in the brain
beta amyloid is the end product that shows up in the brain of
alzheimers patients
if you have alzheimers you will have a positive scan

early on in the process it may not be very positive though

this scan is commercially available
according to a blog friend medicare will be reviewing whether or
not it will pay for these scans later this month
if they decide they will pay for it then the private insurances will
follow suit

this scan will probably become part of the workup that will be done
on patients with dementia or memory loss to determine if their
symptoms are due to alzheimers disease

i plan on having it done soon myself whether insurance pays
for it or not
as i want to know if mine is positive

ive had one scan already and will have another one in april of
this year as part of the adni study
i dont get those results though

so here i am today
i have had 4 amyvid pet scans
i will get another one soon
luckily i havent had to pay for mine since they are all done in the research world

so thats the status of the amyvid pet scan in a memory loss workup in 2021
it can help to solidify the diagnosis of alzheimers or rule it out as a cause of memory loss

the organicgreen doctor

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