23andnotme

23ANDNOTME
6 and a half years ago when i got my diagnosis
i began searching to solidify what it was due to
eventually it seems its due to
alzheimers disease

one of the tests i did was a genetic test
i had it done as part of the adni 2 alzheimers disease study i was in
however
as ive written before
i couldnt get those results from the study
so
if i wanted to know what they were
i would have to have blood redrawn and sent into a private lab

so
my neurologist gave me the form from the lab
where she sent her diagnostic neurological tests

so
i took the form
checked the box for alzheimers blood tests
sent it in with my blood
i got a phone call
you need to get your doctor to sign this form
verifying that you have been counseled about these tests
and
that you are having symptoms
so
i did that

they then ran the tests

they understood the significance of counseling about these tests

one was a genetic test for the dominant alzheimers gene
you get that one you are going to get
early onset alzheimers disease
100% of the time

mine was negative
now
even though i was a doctor i really didnt understand
that much about this early onset alzheimers gene
it represents less than 1% of the alzheimers cases

then
the other test was the one that tests for your risk for
late onset alzheimers disease
its called the apoe 4 gene

again
i really didnt understand the significance of this test
then when it was done
i surely do now

mine was positive
i was devastated
taking this as the final answer as why i was having some
short term memory loss
then
as i read more and started to understand the apoe 4 gene
it took several years to really understand what it means
i finally do

if your apoe4 gene is positive
especially if it is the apoe 4/apoe4 gene
it doesnt mean you are gonna get alzheimers disease
like with the dominant genes

it just means you are at a higher risk for getting alzheimers disease
how you live your life taking care of your health
decides usually how severe if at all the disease is

some people with the apoe 4 gene never get alzheimers disease
those with the gene though are at a higher risk
maybe 10-20 times increased risk

in my case
the apoe 4/apoe 4 put me at risk for getting the disease
and
it looks like i have it


23andme.com

so as i read THIS ARTICLE about
23andme being allowed to do these 10 tests
i sort of feel uncomfortable
they mention there is a test for late onset alzheimers disease
in the 10 test panel
its the apoe 4 gene test they are talking about

ive known folks who had that done
they think they are doomed
they arent though
they just have increased risk
some of that risk they can alter

it is unlikely that most folks who do that 10 panel test
have the knowledge that i have about the apoe 4 test
which i have learned by reading a lot of about the test
i am able to put the test in its true perspective

for me
its one piece to my alzheimers puzzle
add
a strong family history
a normal memory test followed by abnormal memory tests
an abnormal levels of beta amyloid and tau in my spinal fluid
that is alzheimers levels
a positive amyvid pet scan for beta amyloid

all these together make my diagnosis what it is now
mild cognitive impariment due to alzheimers disease
with some degree of certainty

the apoe 4 test alone doesnt mean as much

the 23andme panel results
really if you do this
any positive test should be repeated in a reputable lab to make
sure it is really positive
any positive test should be discussed with a specialist in that field
or a geneticist
who can really explain what the test means

so far me
its 23andnotme

dont willy nilly do lab tests because you can
there is harm
emotionally
and
financially that can happen

get it in your medical record
you are now a high risk patient
you may not get
life insurance
long term care insurance
disability insurance
based on what happens with the health care
you may not get health insurance

be careful

the organicgreen doctor