Friday, April 12, 2013

alzheimers symposium part 2

ALZHEIMERS SYMPOSIUM PART 2
i will present a talk on my story with possible alzheimers
at the alzheimers symposium at the mayborn center in temple texas
on tuesday april 30, 2013

here is the the link to register for the event

part 2
neurology visit

so i went to dallas to the neurology appointment with my wife
they asked that i get the following labs before i came to the appointment

labs to be done
cbc complete blood count
metabolic profile with electrolytes liver function tests kidney function tests
and glucose
vitamin b12 level
syphilis antibody test
hiv antibody test
tsh for thyroid function
urinalysis
mri scan of the brain
depression screen
neuropsychological testing or a good mental status exam
good history and physical

this is the list of lab tests and exams that you need to have done if you
are being evaluated for memory loss or dementia
anything less is not acceptable

a cbc complete blood count checks for anemia or a low white count

a metabolic or chemistry profile checks the electrolytes for a low or high
sodium or potassium which can cause memory loss
abnormal liver tests
abnormal kidney tests the bun and creatinine which is elevated
if you have kidney failure

a glucose which can detect diabetes

a vitamin b12 level
if you have a low b12 level you can have problems with memory

syphilis antibody test
you can have latent syphilis that shows up as later in life in the
central nervous system and cause dementia

hiv antibody test

tsh for thyroid function
thyroid stimulating hormone will detect hypothyroidism or low thryoid
which can cause depression and memory loss

urinalysis to check for blood or protein in the urine

a depression screen
depression can cause memory loss

a mri of the brain
this is looking for increased fluid in the brain shrinkage or atrophy of the brain
brain tumors or masses or cancer old scar tissue evidence of stroke
aneurysms or white matter hyperintensities which can be associated with
an increased incidence of dementia
they are looking for something treatable

a neruopsychological test the gold standard for evaluation or a
good mental status evaluation in the office as  a screening test
the mmse test misses me but a mocha a more involved test picks up
some subtle changes on me that would make a physician want to do more
testing with the gold standard neuropsychological test

then a good history and physical examination looking for something in the
exam that would explain the memory loss

so i saw the neurologist who looked at my neuropsychological test and
my lab tests and mri scan that were done and did a history and exam

she said
dr nash
you have early mild cognitive impairment amnestic type
(short term memory loss) that is earlier than what we usually see
and it may be due to alzheimers disease

here why
you had a normal mental status exam three years ago with your long term
care insurance and now using the same test you have an abnormal result
and other short term memory tests are abnormal

your labs and scans show a normal evaluation for other treatable causes of memory loss

you have a very strong family history of alzheimers disease
mother father brother cousin aunts and uncles grandparents

you put this all together and it says possible alzheimers disease
(later other tests done point towards this diagnosis also)

i think you should consider getting on the medication aricept (donepezil)
i had read enough about my diagnosis and knew thats what i wanted to do

aricept (donepezil)
is an acetycholineterase inhibitor
it raises the acetylcholine levels in the brain and makes the brain and nerve
cells work better

it does not treat slow down or prevent the disease
it only delays the symptoms

one neurologists told me that 1/3 get better on it
1/3 stay the same
1/3 dont get better

so 2/3 of those that start it stay the same for a while or improve
near 100% of those who dont take it dont get better

the earlier you start the aricept (donepezil) the longer it seems to work
it however will get to the point where it doesnt work any more
as the disease just marches on

the side effects of the medicine is related to the elevated acetylcholine
the first month you take as i found out is when the side effects are the worst
they get better however over time

i have had most of the side effects
i get insomnia that is worse if i take it before bedtime
my brother took his however at bedtime and never had any sleep problems
i take it in the morning after breakfast to counter the nausea that occurs
and to help with the insomnia
i also snack some in the morning to keep the nausea at bay

i have the most vivid dreams those aricept dreams
the kind when you wake up you want to go back to sleep so you
finish them
they are never bad ones just pleasant ones

i have restless sleep
i get restless during the morning not long after i take it
which gets better as the day progresses as does the nausea

i get severe leg cramps when i sleep
the kind that get you up out of bed
they are worse if i have done a lot of exercise

i get blurry vision about 2-3 hours after i take it but that goes away
fairly quickly
it was worse the first month but now is better

warning
if you or a family member is on this medicine dont abruptly stop it
without talking to their doctor
eg if i were to discontinue this medicine i might drop down to the level
i would have been without the medicine and if i restart it
i might not ever return back to the same cognitive level i was at

other drugs used in alzheimers are
exelon which works similar to aricept
it also comes in a patch form which helps with the nausea

namenda works differently that the other two
its usually used as an add on medicine when things start getting worse or if
there is problems taking the other two

recent studies have shown that using the aricept and namenda together at
the beginning of the diagnosis may be helpful
eg
pat summitt started on those two meds when she was first diagnosed

so she wrote that prescription for aircept and handed it two me
a surreal moment as i had just 24 hours before written the same prescription
handed it to a patient and his daughter and reviewed those same side effects

i was not accepted in the normal control group of the
alzheimers disease neuroimaging initiative study
but was told after i was on the aricept (donepezil) for 3 months that i
could reenter the study in the early mild cognitive impairment group

i never returned to work
i went on short term disability then later on long term disability

once i was diagnosed i became uninsurable
no life insurance no disability insurance no health insurance no long term
care insurance no malpractice insurance

luckily i had those all in place before the diagnosis was made

so put a lot of thought into getting this evaluation
you need to be ready
soically psychologically and economically ready
if you are not ready it can be devastating

next friday april 19 i will blog on
alzheimers symposium part 3
the alzheimers disease neuroimaging initiative

the organicgreen doctor

2 comments:

  1. So thankful for your blog. My husband, diagnosed with PD 14 years, had been on the Exelon patch for a few years, then on Aricept and now Aricept and Namenda. Each time a med is added I wonder if it really makes a difference but am reminded that if no meds he is guaranteed a negative difference. Thank you for sharing.

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    Replies
    1. thanks for reading the blog.
      i dont know if the aricept is helping me or not.
      i have to presume that it is and will continue to takeit. i will not stop it to find out.

      togd

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