RSS Feed Print
More on improving correctness of diagnosis
Mimi S.
Posted: Tuesday, December 11, 2012 2:58 PM
Joined: 11/29/2011
Posts: 7027


Basically says what we already know, but more confirmation. The more tests that are used to support a diagnosis, the more accurate the final diagnosis will be. Authored by Dr. Dorwaiswamy


However, I'm not so sure how easy it is to get the lumbar puncture and the specific PET scan he mentions.  I've heard recently that lumbar punctures are much better than they used to be.

Posted: Tuesday, December 11, 2012 5:15 PM
Joined: 10/28/2012
Posts: 33

i have had all of these tests done as part of the alzheimers disease neuroimaging initiative mentioned in the article

i will have them repeated next spring also




some of these i also had done outside of the study 

the lumbar puncture was easily done in the office sitting

on a massage chair

it was painless and only took a few minutes

the beta amyloid and tau levels can be ran privately at 

certain labs 




the amyloid pet scan is available but is limited to certain 

areas because once the material given iv is mixed up it 

has to be used fairly quickly or it will degrade 

this test will be done in dallas next year



these were ordered by my neurologist



my fdg glucose metabolism test is negative

my beta amyloid and tau protein levels are borderline in the spinal fluid

my neuropsychological tests are positive for short term memory deficits mild

the beta amyloid pet scan or amyvid may help solidify my diagnosis


time will

we are getting closer to being able to make a definitive diagnosis of this disease

while a person is alive and earlier in the disease process


the organicgreen doctor




Posted: Tuesday, December 11, 2012 6:09 PM
Joined: 12/6/2011
Posts: 3326

I, too, had all these tests done, but through the DIAN study.
Posted: Tuesday, December 11, 2012 7:44 PM
Joined: 4/15/2012
Posts: 247

I've had the cognitive testing, improving a bit each year,  the lumbar puncture which showed borderline tau, a MRI which showed no changes from previous MRI'S no shrinkage or atrophy. I have not had the PET Scan yet, my neurologist says I don't need it????? and it isnt available in Wisconsin.


I'm not sure where that leaves me?

Posted: Wednesday, December 12, 2012 6:08 AM
Joined: 10/30/2012
Posts: 271

I noticed that you are from Wisconsin.  I am also.  Maybe you can get the pet scan in Chicago, or is that too far from where you live.  The Illinois border is two hours from our home, and they have some top doctors there.  ( Just a side note, my husband has ftd).
Posted: Wednesday, December 12, 2012 10:16 AM
Joined: 4/15/2012
Posts: 247



I live in Central Wisc and see Neurologists a  University of Frodert Hospital.

I have two barrier to having the PET.


1) My neurologist doesn't think it is needed at this time and won't order it and

2) They don't have the newest PET available.



even if i went somewhere else to get one, i need a prior auth and can't get one