Friday, August 27, 2021

alzheimers news-a tattoo on my brain

ALZHEIMERS NEWS-A TATTOO ON MY BRAIN

he got a tattoo on his brain from taking aducanumab
im hoping i dont get a tattoo on my brain from taking aducanumab
i have an mri in a month to see if i have a tattoo on my brain forming
in the next two years i will have several mris for that reason 

whats a tattoo on my brain

dr daniel gibbs is a neurology researcher a practicing neurologist a medical school and neurology resident teacher a clinical trials participant in the aducanumab study a family member of someone who had alzheimers disease
and
finally a patient like me
with
the diagnosis of mild cognitive impairment due to alzheimers disease

he has a book linked here titled a tattoo on my brain and a blog linked here titled a tattoo on my brain
here is a link to his being patient interview

in his book he chronicles his journey with the disease
looking and writing about it from the eyes of a patient a researcher and a doctor
he has used these insights to give us an unique look at what its like to have this disease early on 

i must say our two cases are so eerily similar
slightly different but close

if you want to know what its like 
what i feel
read his book its all in there
i must add its all in my blog but its all scattered out in hundreds of different postings
most are labeled my story revisited and alzheimers news

like him i plan to write about this as long as i can 

if you are entering the alzheimers world or if you are in there now or if you think you will be there then you should read his book
all you need to know is in the book
its an easy read even for the nonmedical person 
there are a lot of references and links 
he has indexed the book also so you can find topics easy 

i really wish i had read it years ago especially when my mom and younger brother had it

i recommend you get his book and read it and use it as a reference
i recommend you read his blog to follow whats going on in the alzheimers world

if you want to know what your family member or friend was going through in the early stages of their disease then his book will tell you what its like

if you want to know what its like for me then read my blog and or read his book

so
whats a tattoo in the brain

the drug aduhelm (aducanumab) is a monoclonal antibody that binds to the amyloid thats deposited in the brain
as it attaches to the amyloid and tears it loose sometimes bleeding can occur that is usually asymptomatic
if its severe enough it can become symptomatic

in the aducanumab study this can happen but most people dont have symptoms 
if symptoms occur they do an mri and stop the meds until the symptoms resolve
then they restart the meds
if the symptoms are severe which is a rare event then the drug is stopped and like dr gibbs they are removed from the study

he has the homozygous apoe 4 gene which  puts you at risk for these bleeds
i also have the homozygous apoe 4 gene
if you have this gene you are more susceptible to these bleeds

his bleed occurred when they increased his dose
they go from 1 mg/kg for two months then 3 mg/kg for two months then 6 mg/kg for 2 months then 10 mg/kg
10 mg/kg is the dose that seems to work the best for removing amyloid from the brain

his bleed happened when he got the 6 mg/kg dose
in the previous study i made it to the 10 mg/kg before the study was stopped before the pandemic
when the study was restarted i had to start all over again on the 1 mg/kg dose
two weeks ago i go my 3mg/km dose
so far i have had no symptoms

if the bleed is severe enough the iron from the bleed causes a stain that shows up on an mri
dr gibbs calls it 
his tattoo on my brain

i think this mri is scheduled because a month ago i had an ocular migraine
with an ocular migraine you get wavy lines across your visual field in both eyes 
mine lasted 30 minutes with no symptoms initially
my vision was affected enough i couldnt read my computer screen or read my blood pressure readings
later i saw that it was elevated too high
after the vison returned to normal i felt fine
i even two hours later drove to trader joes and later worked in the garden that morning

i had one 3 months before i was diagnosed in 2010
that time i was in the office working 
it also resolved in 30 minutes and was associated with an elevation of my blood pressure

i also this time had a headache for a few days that required acetaminophen to control
i still went about my regular activities

back in 2010 i had an mri and a carotid ultrasound
i also saw a neurologist this time and had another carotid ultrasound
i had had an mri the few days before this episode
i reported this all to the research neurologist also

had i not had this before i would have immediately gone to the emergency room since this can be signs of a tia or transient ischemic attack

no treatment is indicated for me for this except
i control my cholesterol with medication
i monitor my blood pressure on a regular basis
since ive lost weight and was sick last year i have remained off blood pressure medications
i do take a baby aspirin each day per doctors recommendations
an aside dont just start aspirin unless you talk with your doctor
thats real important

so 
i think my mri in a month is to make sure i dont have
a tattoo on my brain

the organicgreeen doctor

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