my story revisited 11

MY STORY REVISITED 11

after i was diagnosed with mild cognitive impairment amnestic type and placed on aricept generic donepezil i was not allowed in the normal control group of the adni 2 or alzheimers disease neuroimaging initiative study

later after being stable on the drugs for three months i was placed in the mild cognitive impairment wing of the adni 2 study

i was in the adni 2 study for 5 years

they wanted an intial mri so i would be ready for the study and for diagnostic reasons for my neurologist

now

i have had a lot of mris done over the last 8 1/2 years in the two long studies i have been in 

i think its well over 10 but you know after a while you quit counting

now as part of these studies you dont get the results

however

for some reason i would get copies sent to me of some of the mri reports

so 

unlike the amyvid pet scans done in the study which i never got an official written report 

so

i know that mine all are normal except for two specks of white matter hyperintensities which are small white specks that are associated with an increased risk for stroke and dementia

when these are seen on folks mris its a warning sign to the patient and to their doctors

no doctor told me that i found out by reading research papers on these white spots

so

thats one of the reasons i got more aggressive with my blood pressure control and my cholesterol control 

doing what i could to not get any more

there is a number for some reason off the top of my head this morning its 7 that means your risk is even greater for these events stroke and dementia to occur

so

i jumped right on a statin drug and my pressure drug and improved my diet and improved my exercise and kept my weight under control

now when they do these mris for memory issues they are looking for explanations for why a person had memory loss

eg

my mom had diffuse cerebral atrophy or brain shrinkage that was compatible with alzheimers disease

she also had a small subdural hematoma from a fall that cleared on its on

my younger brother with his first mri had changes compatible with alzheimers disease

another close relative had brain shrinkage of their frontal and temporal lobes 

these explained all their memory issues

other things they look for is too much fluid in the ventricles of the brain like what happens in the babies that have hydrocephalus

if this normal pressure hydrocephalus can be discovered in adults it can be potentially be treated with shunting of the fluid from the brain like they do in the babies

in some of these patients their memory and neurological symptoms almost totally resolve

other things to find on mri are strokes masses like cysts or aneurysms or tumors or old scars like from trauma or like that lady in the news lately who had a tapeworm cyst

many of these are treatable

if an old stoke is seen then preventative measures can be started like cholesterol and blood pressure measurements maybe aspirin or other drug therapy

so on all my mris the only thing that is found are those two white matter hyperintensities that havent changed but are just sitting there warning me to 

take care of my health to maybe prevent more and maybe slow down the alzheimers thing some

now after the initial mri then i would have more tests 

some i was able to duplicate in the private world

like 

the genetic blood tests for early onset alzheimers genes and the late onset gene apoe 4

the spinal fluid analysis for amyloid and for tau proteins levels of which become abnormal in alzheimers disease

here is what i wrote 8 plus years ago about that first of many mris i would have

as i read these old blogs i realize how much i didnt know and i realize how much i have learned in the last 8 plus years

12-30-2010

MRI TODAY 
i have my mri today as part of my workup
it will be looking for other causes of this disease
such as infection, stroke, abnormal masses, etc that
could be treatable

then the diagnosis might be mci nonamnesic type

that would be nice
then the chances of progression would be about 20-30%
vs the sucky 50-80% of what i have

also there are certain changes on the mri that are seen with
alzheimers and may be found on me in the early stages of
this disease like changes in the part of the brain called the
hippocampus where alzheimers starts
or increases in the size of the ventricles of the brain
or shrinkage in the cortex of the brain

if it is normal then that doesnt mean i dont have mci amnesic type
it just means that changes havent shown up on mri yet

i will give the report of the scan on this blog when i get it

next
in february i will probably have a lumbar puncture for the
research study i am it     

i will have some of the fluid sent off
to a lab to test for tau and amyloid proteins which are proteins that are
found in abnormal levels in alzheimers patients
i will also have dna analysis to see if i carry the genes for
this disease

these tests by themselves dont make a diagnosis but like a
lot of things in medicine when added together they will make the
diagnosis more likely

later on
i will have a pet scan done which will show even better
any changes that may occur in the brain

also when i enter the studies i will have all these tests
on a regular basis as they follow me during the study

except i will not receive the results since i had to sign a waiver

the worse test i may have to have again this year and annually
is the neuropsychological testing
this is where they pick up abnormalities by asking questions
doing drawings etc
i think i would rather have the lumbar puncture instead

but its important since the neuropsychological testing shows how well the brain is
functioning in real time

the organicgreen doctor