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Old 02-06-2012, 03:54 PM   #16
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Re: I'm new and exhausted...

63 is "young" to be diagnosed with A/D. There are over 200 causes of dementia...why do your docs think a/d? What conditions/causes have been considered ruled out to get the a/d diagnosis?

 
Old 02-06-2012, 04:01 PM   #17
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Re: I'm new and exhausted...

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Originally Posted by bethsheba View Post
63 is "young" to be diagnosed with A/D. There are over 200 causes of dementia...why do your docs think a/d? What conditions/causes have been considered ruled out to get the a/d diagnosis?
There are 2 kinds of Alzheimer's (AD):
1. The regular onset for the elderly in the 70s or the 80s.
2. The other kind is called Early Onset Alzheimer's for people who are younger as in the 50s or 60s or even younger. This type has stronger genetic factor.

Of course, it is always important to make sure the doctor has the right diagnosis. There are many ways to test the cognition level with MMSE and also the scan. The tools are very good for testing the dementia these days.

Hugs,
Nina

Last edited by ninamarc; 02-06-2012 at 04:04 PM.

 
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Old 02-06-2012, 04:24 PM   #18
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Re: I'm new and exhausted...

Because EOAD is so uncommon most patients are misdiagnosed or left undiagnosed for too long. They exhaust every other explanation before they decide it is EOAD. There have actually been cases that were diagnosed when the patient was in their 40's. The fact that there is EOAD is proof enough for me that AD is not a "normal part of aging!"

Love, deb

 
Old 02-06-2012, 05:53 PM   #19
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Re: I'm new and exhausted...

We were "lucky" to get a diagnosis quickly, going from an internist to neurologist #1 within a week. We followed up with 2nd and 3rd opinions from additional neurologists, who each confirmed the diagnosis. We then went to a national research center for another workup. This was 10 years ago. At the time, the research center prided itself on being able to correctly diagnose Alzheimers with 90% accuracy. They claim a higher accuracy rate now. (Can you tell that we couldn't believe the diagnosis, and spared no expense at hoping to have Alzheimers' rulled out?) The entire diagnosis process took us about 3 months.

The workups included lots of bloodwork, cat scans, MRIs, and various memory tests. If I remember right, there were other physical exams too. It was an exhaustive process. At one point DH and I spent a full day in a hospital going from lab to medical practioner to lab to medical practitioner. In part, the diagnosis process involved with an early onset diagnosis included ruling out other possible causes. The diagnosis process also appeared to rely heavily on MRI and CAT scan imaging that showed changes in the brain consistent with Alzheimers.

The first neurologist who diagnosed DH with a 10 minute office visit turned out to be as accurate as the hospital research center that ran test after test.

Our family worried about the possible "cause" for his dementia for a few years, especially since there was no family history. Could it have been environmental? Could it have been caused by high cholesterol? Could it be related to blood sugar, a virus, or a random gene mutation? Could it be caused by malformations of blood vessels in the brain, aluminum cooking pans, or the fact that he fell off a horse once? Could it have something to do with spinal pressure, or allergies? After 10 years, we don't spend much time wondering anymore about the diagnosis. Alzheimers' describes it perfectly.

Last edited by Beginning; 02-06-2012 at 05:56 PM.

 
Old 02-06-2012, 06:40 PM   #20
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Re: I'm new and exhausted...

I think this may have been going on for a while but, we brushed it off as forgetfulness. We went to a neurologist after his regular doctor had him go to a sleep lab to get tested for sleep apnea. He was diagnosed with sleep apnea but after two months of using the CPap mask they didn't think his symptoms got any better so they ordered a visit to a hospital memory lab. That was the first encounter with a neurologist. He ran numerous tests (blood work, spinal tap, mri, pet scan) on top of the regular memory exercises they have them do in the office. He pretty much flunked all the exercises except, the numerical test where they subtract backwards from 100 in increments of 7 but, I also told the doctor that he was normally very good at math and that wouldn't be a difficult test for him. He failed the other very simple elementary exercises as well as recall tests. His brain showed atrophy as well as lesions so they diagnosed him with AD. We decided to seek another opinion from another neurologist and he concurred with the memory lab as well as the first neurologist and he was placed on Namenda. The spinal tap results are not back yet from Mayo Clinic. They should be here in another week or so.

 
Old 02-06-2012, 07:32 PM   #21
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Re: I'm new and exhausted...

Scorp... one thing jumped out at me... and shows how different each case is. Mom did well on other parts of the MMSE but there was no way she could count backwards from 100 by 7. She lost her ability to manipulate numbers very early in her disease even though she was an accountant/bookkeeper all of her life.

We also missed Mom's diagnosis for a number of years. Dad had Vascular Dementia and we all knew he could not remember. If something strange happened and Mom didn't remember it then Dad had to have done it. Made sense since he didn't remember She also had her doctor's diagnosis of depression which mimics the dementia symptoms. Then it just all became too obvious. Even though her general physician assured us there was no problem (MMSE score of 27/30) I took her to a Memory Assessment Research Service that specializes in diagnosing dementia. We received back a diagnosis of Moderate to Sever Dementia consistent with Alzheimer's Disease. She was retested in 9 months to confirm the diagnosis. Over the last 6 years it has been validated by way of her decline.

Love, deb

 
Old 02-07-2012, 04:52 AM   #22
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Re: I'm new and exhausted...

Quote:
Originally Posted by ninamarc View Post
There are 2 kinds of Alzheimer's (AD):
....Of course, it is always important to make sure the doctor has the right diagnosis. There are many ways to test the cognition level with MMSE and also the scan. The tools are very good for testing the dementia these days.

Hugs,
Nina
Yes, it is very important to make sure the doctor has the right diagnosis...and not everyone has access to increase the odds of him/her doing so. It sounds like the people on this thread have been fortunate in the sense that they had the financial and medical resources to explore a variety of possibilities.

 
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