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NNadir

(35,842 posts)
Fri May 16, 2025, 05:35 PM Friday

There's likely a test. Would you really want to know the result?

When my oldest son was a newborn he had an obvious birth defect that at first seemed cosmetic, but, as we soon understood, might well involve severe brain involvement, leading to intractable epilepsy, with risks of severe intellectual impairment.

The first doctor to treat the cosmetic effects was something of an asshole, first claiming my son would not need anesthesia for treatment - a blatant lie designed to keep him from going to another department in his institution - but worse, when I asked him if my son should have a brain scan to understand if he would face the complications, said, coldly, "I don't know why you'd want to have a test. There's no treatment." (Actually, for epilepsy, there was a known treatment - brain surgery - but happily my son didn't require it)

Happily my son's brain involvement didn't materialize. He's 30 years old now, doing fine and we're very proud of him.

Still, I'll never forget that moment. We changed doctors of course.

Now I'm an old man, and occasionally things do slip my mind, and so I was reminded of that doctor for my own case:

From my Tech News Feed: New Low-Cost Blood Test Detects Five Biomarkers of Alzheimer's Disease

Excerpt:

Researchers from the Keck School of Medicine of USC have developed a blood test that can identify early signs of Alzheimer’s disease by measuring proteins linked to the condition. The new test, known as Penta-Plex Alzheimer’s Disease Capture Sandwich Immunoassay (5ADCSI), detects five biomarkers simultaneously, which is more than existing blood tests and runs on equipment commonly used in many laboratories. A proof-of-concept study, funded by the National Institutes of Health, was just published in the Journal of Alzheimer’s Disease.



Scientists have found several reliable blood-based biomarkers of Alzheimer’s disease. These proteins, including amyloid and tau, build up in the brain—and blood—as the disease progresses. A blood test for these proteins can help catch the disease in its earliest stages, when treatment might be able to prevent or delay cognitive decline.

Several tests exist, but they are expensive, rely on specialized equipment and can only detect a few biomarkers at a time. By contrast, 5ADCSI can measure five key Alzheimer’s biomarkers and relies on xMAP® technology, a widely available system from the biotechnology company Luminex...


The full paper is here: High precision and cost-effective multiplex quantification of amyloid-β40, amyloid-β42, p181Tau, p217Tau, neurofilament light chain, and glial fibrillary acidic protein from plasma and serum

These are ligand binding tests on a multiplex (Luminex) instrument. I'm not a ligand binding kind of guy, even though my first job was making radiolabeled ligand binding tests. (RIA, a largely extinct technology now). Still the multiplex should eliminate false positives, to a large extent. We'll have to see how this develops.

I'm not quite sure how accurately the test can measure conformational differences, which is how I understand the tau issue, similar to prion disease, albeit although it would be unsurprising if it did so. There are modern mass spec tools that can address conformation, technology known as IMS, but I'd admit they'd be difficult and expensive to use.

There's no treatment, of course, really, so I'm not sure I'd want to know.
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snowybirdie

(6,093 posts)
1. Yes you should
Fri May 16, 2025, 05:40 PM
Friday

Knowing can help you live a healthier lifestyle with exercise that can help delay decline. Wish our family had known earlier.

erronis

(19,699 posts)
2. At my stage of life, yes. Perhaps at earlier times, maybe not.
Fri May 16, 2025, 05:45 PM
Friday

What I mean by that is that I want to be aware of whatever is coming at me - a Mack truck or a brain tumor or other potential life-ending circumstances. I am still inquisitive and learning and hope to be until the last moment. If I decide that I don't want to hear any bad news then I know I've given up learning.

Perhaps when I was younger and raising families the knowledge of a near-term fatal event would not be welcome. If I was in my 40s and told that I had a very good chance of dying from Alzheimer's in my 50s - I don't know. But if it was stretched out to my 70s - maybe.

Guess this is too hypothetical and based on my imperfect knowledge of myself.

NNadir

(35,842 posts)
4. I'm not sure that I really believe that lecanemab is really that effective. It strikes me as similar to aducanumab...
Fri May 16, 2025, 06:07 PM
Friday

...which Biogen pulled, after a controversial approval.

Here's a study that questions the cost effectiveness of lecanemab:

Cost-Effectiveness of Lecanemab for Individuals With Early-Stage Alzheimer Disease

This said, I am not really qualified to make a judgement as I have not looked into the basic science behind its MOA.

radical noodle

(10,196 posts)
9. I had a close friend who developed Alzheimer's
Fri May 16, 2025, 11:15 PM
Friday

The doctor gave her a medication to delay progression (I don't know what it was) and she and her husband thought it helped. But sometimes one may believe what one wants to believe, so there's that.

New drugs and treatments are developed all the time, so I might still want to know. It's an interesting question and I think it may depend on the age of the person you ask. I'm in my late 70s now and I think I feel quite differently about it now than I would have in my 30s or 40s.

multigraincracker

(35,667 posts)
5. My mother died from dementia after 8 long years.
Fri May 16, 2025, 06:18 PM
Friday

I’ll seek death with dignity.
My dad died from kidney failure and it only took 2 weeks. Both at 90 years of age.

NNadir

(35,842 posts)
7. My Mom died of a brain tumor. She was 51. It really sucked.
Fri May 16, 2025, 07:04 PM
Friday

I wondered all my life since her death if it was genetic. (I've outlived both my parents.) I learned just a short while ago that it may have been occupational. The plant where she worked is now a superfund site. Apparently there were a rash of brain tumors in that place.

Anyway, having observed it all close at hand, I'd opt for assisted suicide if I got the same thing. At a certain point there was clearly nothing left in her life that made it worth living. It was all pain and suffering.

I know that she, were her mind intact (which it wasn't) would not have made that choice because of her religious views which I respected but did not share.

For me though, my mortality is what makes life worth living, as life is precious if one is in possession of one's faculties. If one isn't, that's another issue.

multigraincracker

(35,667 posts)
8. I understand asphyxiation by helium is very peaceful.
Fri May 16, 2025, 07:47 PM
Friday

My doctor asked me if I ever had suicidal thoughts I said yes and she asked there are guns in my house. I told there are but I’d never use them for that. Told her all I had to do was place a magnet on my pace maker. She said Oh.
My only goal is to live one day longer than wonderful wife. At least she is 12 years younger than me.

Bernardo de La Paz

(55,721 posts)
6. Treatment is not the only issue and drugs might not be the only treatment
Fri May 16, 2025, 06:27 PM
Friday

There is benefit in preparing one's affairs and preparing friends and family for what might be coming.

Perhaps in absence of drugs, the standard "preventatives" might have good effect if pursued extra diligently. The standard advice to pursue activities that engage the mind (crosswords, learning languages) and especially those that engage both mind and body (playing music, gardening, dancing).

So yes, I'd rather know.

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