after our alzheimers walk this weekend i sure have been doing a lot of soul searching
thinking about my moms course with the disease
thinking about my younger brothers course with the disesase and why he was struck with it so young
thinking about my father knowing now all i know about this disease that he probably had it when he died
thinking about my older brother who was told he had it but since changing up his medications for his heart and changing off his aricept and nameda he has seem to be stable
thinking about a lot
thinking about when i was diagnosed and how overwhelming it was
our life sort of came to a screeching halt
thinking about a lot of the decisions i and we made picking out research and doing the workup that now is becoming the standard workup for someone who has memory loss
i ran across this blog i wrote below
now i know
my fdg glucose test was negative which is negative early on in the disease but later turns positive
my amyvid pet scan for amyloid in the brain was positive
my spinal tap for amyloid and tau was positive and knowing what i now know a second one being tested would even be more positive
my genetic test for apoe4 apoe4 was positive and how today i know what that really means
my b12 level did continue to drop below normal but with oral supplements has returned to normal as long as i stay on the b12
so
here is my blog from about 8 years ago on all my diagnositic testing i had done
i am glad i had it all done and participated in the adni2 and later the biogen aducanumab study
so
i sit here today with normal memory on my memory tests
for now anyway
awaiting notification of being able to restart the biogen aducanumab study next spring
over the last 9 years i have has as complete a workup that one can have for memory loss
there were lots and lots of ups and downs the last 9 years
with
the overall projectile being upward
XXXX
07-22-2011
MY STORY-FINAL ANSWER PART TWO
this is the part two of a three part blog on my story-final answer
this blog today will deal with the neurology visits, the medication
i am on, the research study im in, and the diagnostic tests that
have been done
next week the blog will be on what it all means for me and maybe
for you and your family
neurology visit
i met with the neurologist on december 21 2010
she interviewed me and my wife she
she also did a neurological exam on me
she reviewed the neuropsychological exam i had done-the one
where i did poorly on the short term memory portion
because i had a normal neuropsychological exam 2 years ago
followed by a abnormal neuropsychological exam 2 years later
because i had noticed problems with my memory over the last
few months and
because of my strong family history of alzhiemers disease in my
family-mother, father, a close younger relative and probably
numerous aunts and uncles
she felt and i agreed with her that i had early mild cognitive
impairment amnestic type probably from alzheimers disease
(remember alzheimers disease is only 100% diagnosed at autopsy)
she felt and i agreed with her that i should start on a medication
called aricept (donepezil)
i knew that medicine well
i had just written it for a patient of mine the day before as he
has mild alzheimers disease
my mother was on the same medicine and my close relative is
presently on it
so why do i need to be on this medicine
if what i have is due to alzheimers disease then it will progress
rapidly or may progress slowly but it will eventually progress to
the same awful end point
the medication aricept (donepezil) doesnt stop the disease process-
that deposition of amyloid in the brain and the unraveling of the tau
proteins in the nerve cell that may be the cause or end result of
alzhiemers-
it just marches on no matter what
the aricept (donepezil) inhibits acetylcholine esterase an enzyme
that breaks down acetycholine in the nerve cells
by inhibiting this enzyme the levels of aceylcholine stay elevated in
the nerve cells so what nerve cells remain work better
by taking the aircept (donepezil) the aceylcholine levels are kept
high and the brain works better
if you stop the aricept (donepezil) the acetylcholine levels drop and
the brain doesnt function as well
the bad thing is when you restart the aricept (donepezil) you dont
regain back to where you were
so it was decided that i take the medicine to maintain my status
where it was now rather than wait to see if my memory got worse
then start the medicine ie i would have lost ground that i could
never regain
so i have been on the medicine now for 7 months
the side effects are tolerable
it causes vivid dreams more than ive had in the past
it causes a figgidness especially in the morning time after i take it
i have to go outside and work or take a long walk
it also causes a restless leg like symptoms especially at night
it also interferes with sleep
both of these symptoms are relieved somewhat by taking a
childs dose of benadryl
i have not had any of the gastrointestinal symptoms that some
people have
so i have stayed on this medicine now and will stay on it until
it doesnt work anymore
at that time usually another medicine is added to the
aricept (donepezil)
when that will be i dont know
it could be in 1-3 years or 5 years or 10 years or never
i then underwent testing to rule out other treatable causes of
my memory loss
i had a complete blood count to rule out anemia, infection, leukemia,
a complete metabolic panel to rule out diabetes, electrolyte
problems, kidney disease, liver disease, a tsh level to rule
out hypothyroidism, a b12 level, a hiv test, a syphilis test, hepatitis
screening, a urinalysis, and a sed rate to rule out inflammation--
all of these were normal
i had an ulrasound of the carotids to rule out blockage to the arteries
in the neck--this was normal
i also had a mri with and without contrast to rule out aneurysm,
tumors, strokes, circulatory problems, brain shrinkage, and
increased fluid in the brain--the mri was nomal
i was also screened for depression several times and i dont feel
depressed and the screens were negative for depression
after a few months on the aricept (donepezil) i did a followup
visit with the neurologist
i will see her every 6 months and will remain on the medication
i also was now able to enter the adni-2 (alzheimers disease
neuroimaging initiative) study at the university of texas medical
school memory clinic since i was stable on the medication
this study is important as it may define how a person is
evaluated for alzheimers disease in the future with these tests
that i am having done
this time i was entered not in the normal control group but in the
early mild cognitive impairment group
the other groups are normal, late mild cognitive impairment
and alzheimers disease (aint there yet)
during the initial visit i had another neuropsychological exam,
a screen for depression, the same labs as above, and an
mri of the brain-the short term memory problems were still
present and the labs and mri were normal
i then had blood drawn for genetic tests and other dna and
rna tests-one of these genetic tests is for the apoe 4 genotype
which is known as the alzheimers gene
i underwent a spinal tap for amyloid protein (beta amyloid protein)
and tau protein-more about them later
i had a fdg (flurodeoxyglucose) pet scan which measures glucose
metabolism in the brain
in alzheimers disease the glucose metabolism slows and the fdg
pet scan shows early on in mild cognitive impairment a decreased
uptake in or near the hipppocampus on the undersurface of the
brain where memory occurs
above is a fdg scan that shows decreased uptake (the red color)
in mild cognitive impairment and in alzheimers disease
the less red the less glucose being uptaken
i also had a florbetapir f 18 pet scan which measures amyloid in the
brain-this is a research pet scan not available outside of research-
in mild cognitive there is an increase uptake in the hippocampus area
as the disease progresses (as more amyloid gets deposited) the
scan turns positive diffusely across the brain
this is a scan similar to the amyloid scan mentioned above
you can see the increased red amyloid deposition in alzheimers
disease vs a normal control scan
i will never see the reports of the labs, mris or the pet scan reports
as they are protected by the research study
that is part of the deal
i will have the pet scans and lumbar puncture every 2 years
i will have the mri at 3 mo 6 mo 12 mo 24 mo 36 mo 48 mo
i will also do neuropsychological tests, depression tests, and
blood work at each visit
i elected to have the apoe genotyping through my primary care
provider as i wanted to know the results
i felt like i was well versed on alzhiemers disease and understood
what the apoe tests mean and what limitations it has
the apoe gene is called the alzheimers gene although it is one of
several that may be associated with alzheimers
the apoe gene can be 2, 3, or 4
apoe 2 may be protective for alzheimers
apoe 3 may have milder degrees of alzheimers
apoe 4 i call it the sucky gene
a genotype of a single apoe 4 gene (heterozygous for you
science folks) carries a risk of 10-50 % chance of developing
azheimers disease
a genotype of double apoe 4 gene/apoe 4 gene (homozygous)
carries a risk of 50-90 % chance of developing alzheimers disease
well i got screwed it looks like
i have the apoe 4/apoe 4 homozygous gene
ie i got it from each of my parents
i also opted to obtain spinal fluid for analysis of biomarkers for
alzheimers disease through my primary care provider
one of them is the beta amyloid protein
in alzheimers disease as the amyloid gets deposited in the brain
the amyloid levels go down in the spinal fluid
well i got screwed again as my beta amyloid protein is low in my
spinal fluid
the other test on the spinal fluid is the tau protein
its a protein thats found in the brain thats involved in the nerve cells
as this protein gets unraveled it gets phoshorylated and the p-tau
levels in the spinal fluids go up
well my levels were in the borderline level for alzheimers disease
the left side of this graph is the beta amyloid level
the level is low
the horizontal side is the ptau level
the level is borderline
so i have a normal neuropsychological exam 2 years ago followed
by abnormal neuropsyhological exams showing short term memory
problems,
noticeable memory problems to me,
a strong family history of alzheimers,
a positive apoe 4/apoe 4 genotype,
a low beta amyloid in the spinal fluid and
a borderline level of p tau protein in the spinal fluid
all of these point to azheimers disease as the cause of my mild
cognitive impairment
if i could see the reports of the fdg pet scan and the amyloid pet
scan i would have an even more accurate picture of where i stand
next week in part three i will try to put all of this together and what
it means to me, my family and possibly to you
XXXX
the organicgreen doctor
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