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Comment by joshocar | Hacker News Reader

I'm sorry that your mother had to go through that. My partner is a neurologist and she hates having to give an ALS diagnosis. It fills her with dread when symptoms align with a possible ALS diagnosis. If she doesn't have a conclusion diagnosis she will sometimes not even suggest that something might be ALS because of the suicide risk. Personally, I think we will have a treatment for it in my lifetime.

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>It fills her with dread when symptoms align with a possible ALS diagnosis. If she doesn't have a conclusion diagnosis she will sometimes not even suggest that something might be ALS because of the suicide risk.

This is a huge problem. Someone close to our family spent a lot of money to get a diagnosis because none of the doctors wanted to "go there". They ended up having to visit the MAYO Clinic for 2 weeks and spent a small fortune to find out, it hurt the family financially.

My middle school chemistry teacher offed himself in his backyard with a shotgun when he started noticing symptoms of Huntington's (which his mother died of). I'd taken chemistry with him the previous year and he was easily the best chemistry teacher ever.

It's an issue but without a cure or even viable ameliorative treatment, suicide is 100% a a legit personal choice.

Suicide is not personal, as with any pre-mature death. It greatly affects the surviving family.

So does ALS. People only live on average 2-5 years post-diagnosis, anyway, so, suicide really only speeds up the inevitable by a very tiny bit.

The immediate family member dying with Huntington's disease also clearly affected the rest of the family, that's basically saying her death wasn't personal either. Maybe this is an overly reductive false dilemma.

Knowing an immediate family member died of something that has a genetic component gives people catalysts to watch closely for.

https://www.emcell.com/treatments/als-mnd/

A potential treatment option for ALS, using fetal stem cells, and so why not widely known - especially not in North America; free documentary on the Emcell clinic here - https://stemcellsmovie.com/ - they've been doing research using fetal stem cells for 30 years, and providing clinically for 25.

MS is also apparently stopped and regressed (damage/degeneration healed) if treated/healed if degeneration of the body's healing systems aren't too far degraded.

Good. A few years back, I was having questionable symptoms that pointed towards ALS, and my neurologist made the mistake of telling me.

The two months between that day and the round of tests that were able to prove his theory wrong were very easily the worst of my life.

It it my understanding from talking to the same neurologist that ALS is a diagnosis of exclusion. When everything is ruled out the last diagnosis is ALS.

Is that because ALS is such an unwelcome diagnosis that all alternative diagnoses are explored first?

Or is there some other reason for testing theories in that order?

Generally the exclusion method is used because there is no conclusive direct test (or the test itself is damaging). Alzheimer's has no direct test either to my knowledge, though there is a lot of work going on.

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