organicgreendoctor: my amyloid office visit

organicgreendoctor: my amyloid office visit: MY AMYLOID OFFICE VISIT yesterday i had my first office visit at cedars sinai neurology in los angeles to help me decide whats next for me i...

my amyloid office visit

MY AMYLOID OFFICE VISIT

yesterday i had my first office visit at cedars sinai neurology in los angeles to help me decide whats next for me in my battle with slowing down my alzheimers disease

here is my story on how i got here
i must say after an hour of memory testing i am wandering is all of this worth it
my wife she and i both think so

as i told the neurologist yesterday i was accidently diagnosed in 2010 when i volunteered to be in the adni2 research study in the normal control group
during the neuropsychological exam i was found to have memory loss greater than it should be
i was sent to a neurologist who diagnosed me with mild cognitive impairment that was later confirmed to be alzheimers based on positive spinal fluid analysis and later on an amyloid pet scan

after this i was placed in the mild cognitive impairment wing of the study
i received 2 amyloid pet scans multiple mris of the brain multiple memory testing two spinal taps and lots of blood tests

in 2015 i finished the adni2 study
 
in 2016 i qualified for the aduhelm or aducanumab clinical trial because of my memory testing and an abnormal or positive amyloid pet scan

in the theory of what happens in alzheimers
amyloid plaque builds up and damages brain cells
tau proteins in the nerve cells get damaged and unwind and form tangles killing more brain cells
inflammation then sets it to kill even more brain cells

right now we have drugs leqembi and kisunia that are antiamyloid antibodies that remove the amyloid from the brain
it looks like doing this slows down memory loss by about 30%

these two are on the market now and available for use in mild cognitive impairment and mild alzheimers

the earlier you start one of these two drugs the better they work
if you wait too late well its too late they dont help

in 2016 i was accepted into the aduhelm or aducanumab study where i received 34 months of aducanumab
the study was stopped in 2024 since aducanumabs sister drug leqembi worked better
so the study was stopped and aducanumab was taken off the market

my last study visit was 2025 which showed my memory was back to normal for my age

my last amyloid pet scan was negative for amyloid plaques per a verbal report

now enter yesterday
i was waiting for what to do

i am ready to make the next move 

is it to start leqembi maintenance dosing to keep the amyloid plaques from reoccurring

leqembi aducanumabs cousin is given for 18 months then a monthly dose is given to keep plaques from reaccumulating

kisunia is given for several months to remove the amyloid plaques then no maintenance is given

There is a study starting now where patients who have no symptoms but who have plaques are given leqembi to see if by treating real early then this drug may even work better since its given early

my neurologist i saw yesterday was my neurologist when i was in the aducanumab study but now is at cedars sinai

i have not seen her as a patient since 2020

She was so happy to see my wife she and i

she could not believe i was doing so well

as i was told yesterday if i went into an neurology office and had memory testing without al the history they would have just sent me back to my primary care doctor
but
they were surprised i was doing so well 10 years after starting these treatments

they told me i was now a clinical study of one
there are not many of you like you out there they said

we were excited to reconnect with the neurologist

so yes i had to do those dang memory testing again which were normal for my age group
i am 76 so my memory is normal for my age

so the plan is 

do an amyloid pet scan to see if any amyloid plaques have reoccurred
do an mri to make sure my brain looks ok
numerous mris in the last 16 years have been normal

if plaques have reaccumulated then leqembi treatment or maintenance will be started as infusions or as at home injections

i am apoe4 apoe4 positive which puts me at risk for aria or brain bleeds
i did not have any aria with my 34 infusions so i shouldnt have an issue with the leqembi

if my amyloid pet scan is negative i will probably wait until the amyloid reaccumulates to get treated again

i might have to have a spinal tap to quantify how much amyloid and tau is in my spinal fluid

so my amyloid office visit was a good one
we are happy we reconnected with a neurologist who is up to date on these treatments

It is important to get diagnosed early probably maybe even before symptoms start
There are blood tests coming on the market this year that will be used as a screening test for alzheimers

i am living proof of that
early diagnosis can make a difference

yes
it was a good day 
i might have more time left after all

the organicgreen doctor

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