Hello All
Its been a few weeks since the 'vacation that was'. My husband has improved and physically doing well. I'm compelled to spew here because we've seen all the follow up drs. and finally saw the neurologist who ordered another MRI to compare with the one in 2002..The report is 'negative'..only AGE RELATED CHANGES..same as last time. The nurse said this 'could possibly cause memory problems'. I just wonder now,how many of you have heard this?

What if you're not of AGE to have age related changes?
My husband's age related changes began at about 60. He is now 65. My MOTHER, who is nearly 84, has much better memory than my husband! At least she KNOWS when she doesn't remember something! I'm trying to calm down and breathe.
but seriously, have you all had this experience? YIKES!
So glad you are there
Judy

Hello and thank you for that very helpful information! I am going to print it and keep it handy.
It certainly makes me feel like the Dr. just put me off when I suggested the PET. Maybe they don't know how to interpret the results. I supposedly live near a good medical center but maybe its not as good as it should be. In fact, the neuropsychologist said that she wished the medical center had a neuro-radiologist on staff. Makes me think that if we could FIND one, we might get a different reading from the MRI.
I'm not able to visit this site as much as I'd like right now. Have to grab a few minutes here and there. So I'm so glad to hear from you both and believe the information you provided would help the dr.
Thanks again
Judy

Joan Marie, As usual, you have provided very useful information.Many times , because of the cost, the doctors do not want to ask for these tests as the insurance companies are into cost averaging instead of answers.My mother was a prime example.IF THEY WILL NOT ALLOW THE USE OF THESE TESTS THEN WHY BOTHER TO DEVELOPE THEM?They allow our loved ones to be given these expensive medicines with out a true diagnosis.I wonder if they would be so free to write these prescriptions if these had to deal with the many side affects that occur?In the long run it would benefit everyone to have answers and not guesses through trial and error with our loved ones being the guinea pigs

You are most welcome, Judy... and please know that, unfortunately, many many caregivers are in the same boat.

The following quotes are taken from Diagnosing Alzheimer's as reviewed by David N. Neubauer MD, Assistant Professor of Psychiatry at The Johns Hopkins University School of Medicine.

Why does it take so long to get Alzheimer's diagnosed
Researchers at the Oregon Health Sciences University in Portland found that it took an average of 30 months from the time family members first noticed warning signs to get a diagnosis. After interviewing 244 caregivers and close relatives of people with Alzheimer's, they reported the reasons for the delay in the April 1999 issue of the American Journal of Alzheimer's Disease. The reasons indicate why it's so important to understand Alzheimer's and know the warning signs.

The most common reason, cited by 72% of the caregivers, was that they did not know about Alzheimer's and did not think the changes they saw in the person were the result of a disease. Half of the caregivers thought the changes were just a normal part of aging. Other reasons included not knowing what kind of doctor to see (44%), not knowing how to explain the problems to the doctor (38%), or not being able to see the doctor in private (27%). Sometimes the response of the doctor was the problem: 29% of caregivers complained that the doctor didn't take their concerns seriously, while 25% said their doctor told them the problems were due to normal aging.

Another worthy quote from this article follows:
Doctors may employ various brain imaging exams, such as an MRI or CT scan, or brain activity tests, such as an EEG or PET, to rule out tumors, strokes and blood clots in the brain.


As you may know, Judy, it's not just the tests that are taken but how they are interpreted. Your husband's neurologist might benefit himself and more than a few others by looking at the National Insitute on Aging's recent interests (as described in the following link): National Institute on Aging, industry launch Alzheimer's disease neuroimaging initiative.

You may find the two following quotes to be of significant interest:
Neuroimaging research has suggested that PET or MRI may serve as a more sensitive and consistent measure of disease progression than the neuropsychological and cognitive assessments now typically used in research and clinical practice. As MCI and AD progress, for example, areas of the brain involved with memory, such as the hippocampus (a part of the brain heavily involved in memory), shrink.

Using the high resolution images produced by MRI, researchers will evaluate the best ways of measuring this volume loss in the hippocampus and other brain structures. PET scans assess brain function by measuring the rate of metabolism of glucose, the brain's fuel. PET scans of people with AD show that glucose in certain parts of the brain is metabolized at lower levels than in healthy people, and previous studies have shown that low glucose etabolism can be seen in some people even before noticeable symptoms of memory loss occur. The iniative will seek to identify additional biological factors from blood, cerebrospinal fuid (CSF), and urine samples.


In closing, we are still at a crossroads with many doctors because the "failsafe" diagnosis of Alzheimer's remains in autopsy. Obviously, that is too late to do anything for the effected and their family members. Even Medicare is now underwriting PET scans for those cases difficult to diagnose, much like your husband's case. Don't stop, Judy... keep pushing... keep educating... and, if necessary, take your husband to either the Mayo Clinic, a Scripps facility, or a teaching university to secure an accurate diagnosis and relevant treatment plan. Do not settle for anything less... your husband deserves it and so do you!

I apologize for the length of this post but as you can see, many of us have begun this journey the same way you have and though the frustration is great, do not be deterred. We are with you.

Joan Marie

Thank you Joan Marie and Edyth Ann
Our next appointment with neurologist is Dec.9
I did ask about a PET scan at our last visit and was told that the results aren't reliable. Dr.didn't think it would be useful. So when he suggested the MRI I thought something would look at least a bit different. Thank you for suggesting the SPECT. I certainly will ask for it. It helped to hear from each of you. I know these doctors MUST see sufficient numbers of patients with these problems that they are not naive..Is it that they wait until the family demands more before they can go further?
We'll keep trying.
Thanks again
Judy

Hi Judy... so glad YOU are here!

Hoping you see this post before your next visit with your husband's neurological team. MRI's are often NOT "the" defining diagnostic tool related to the many subtleties of memory loss... it's just one of many radiological workups. I know I've sung this tune before but am willingly adding to the refrain by suggesting you appeal for a SPECT scan as part of the continuing diagnostic process. This scan can become critical when attempting to define hard to diagnose reasons for memory impairment, perceptual problems, and personality changes... especially when attempting to treat a person who is as young as your husband. Without it my husband, at the age of 69 when he was diagnosed nearly three years ago, would probably still be living in AD "limbo" without any proactive treatment.

As always, I'm wishing you and your husband success with securing an accurate diagnosis and relevant medication for his condition... whatever may be the cause. Stay strong and know we're with you.

Joan Marie

Nope age does not cause memory problems especially as young as 65. Age is a risk factor in developing conditions/diseases that can cause memory problems but not a cause.