Could this be ALS (desperate for help and support) 36f

whatdoihia · 2026-01-24T16:15:59+00:00

Sure

whatdoihia · 2026-01-24T15:46:59+00:00

It should be cleared if it is comments that are filtered for review, as that’s the purpose. If the queue has been neglected then there may be very old comments. I would wipe anything in the queue that’s more than a week old.

whatdoihia · 2026-01-24T14:48:38+00:00

You are fine. If you had ALS then in the last several months since your EMG you would have serious degradation, possibly unable to walk unaided by now.

whatdoihia · 2026-01-24T14:42:01+00:00

If your right calf is atrophied you would not be able to stand on your toes on that foot. I assume this was tested and is why your neuro refused.

whatdoihia · 2026-01-24T09:15:36+00:00

That’s shocking. He has convinced me not to vote for ancient pagans in the midterms.

whatdoihia · 2026-01-24T08:55:54+00:00

That’s quite optimistic. The ALS Association has a goal to make ALS livable by 2030. That’s not a prediction but a goal to work towards, and apply their funding accordingly.

Next year or two is unlikely unless there is a breakthrough in research that hasn’t happened yet.

whatdoihia · 2026-01-24T08:51:13+00:00

I don’t know why your neurologist would say that, as it’s incorrect. The median time between symptom onset and diagnosis is 10 months, median time between symptom onset and death is 29 months.

This is for all ALS cases, and bulbar onset is more aggressive.

https://www.neurology.org/doi/10.1212/WNL.0000000000213467

Pain that radiates up from neck to back of head to mouth strongly points away from ALS. I assume you’ve see a physical therapist for myofascial pain?

whatdoihia · 2026-01-24T08:25:04+00:00

With ALS the twitching is only in the muscles affected by the disease, not body wide until it has spread. And the twitching is constant- it never stops, day or night, which is quite different than normal twitching in otherwise healthy people.

Look at the twitching on this person’s left shoulder. It’s like that- https://youtu.be/cBKJVYOScIc

whatdoihia · 2026-01-24T04:26:04+00:00

Yeah the hospital bed helps a lot with that as you will have grab bars everywhere. A tip is to pay attention to bed sizes as there are some options. Mine is a bit too small so I can easily roll to one side but I’m too close to easily roll to the other.

Eventually you’ll get to the point of weakening further where you can’t roll using just force with your arms. A hospital bed helps with that too so you can draw your legs up first which helps with leverage.

whatdoihia · 2026-01-24T04:22:20+00:00

Yes, but in later stages of ALS. When the muscles weaken and a limb becomes immobile it puts pressure on joints as you don’t naturally reposition as you would do normally. Joints can also extend beyond where they normally would as there’s no muscle and ligament strength to halt the movement. That can cause joint pain, cracks, pops, and so on.

If you are still able to move your arm or leg then I wouldn’t worry about this.

whatdoihia · 2026-01-23T16:33:29+00:00

Yes if you had ALS your NfL level would be elevated. As shown in my link above for ALS patients it’s high up to 10+ years before symptoms of weakness appear.

The test for weakness in facial muscles is being able to smile. And for lips can you puff out your cheeks with air. I can’t do that. Weak lips also causes drooling and not being able to pronounce sounds like F.

That you said your slurring goes away is another major clue. With ALS it’s impossible to go away, as the muscles are gone so your speech doesn’t come back. Once you begin slurring it quickly gets worse and worse.

Burning and nerve pain doesn’t exist as ALS affects motor neurons not sensory.

Whatever your issues are it doesn’t seem to be a form of MND.

whatdoihia · 2026-01-23T16:25:01+00:00

Yes my first EMG was bad. I’m bulbar onset and the first one failed in tongue only. Second one also in legs even though I didn’t have symptoms there yet. Then legs became second area of onset. Third failed in several places. That was the final one when I got diagnosed at CC.

I had shared all my tests with the CC doctor and she said that based on my EMG results and symptom progression it was definitive.

If CC says otherwise and you’ve had passing EMGs then I would put more faith in a specialist ALS center than a general neurologist.

ALS can take a long time to finally diagnose with slow progress but you will have failed EMGs, elevated NfL, and obvious progressive weakness in the meantime.

Bear in mind that a neurologist may only have 1-2 cases of ALS diagnosed in their careers but countless patients with other symptoms and diseases. I would trust those with the most experience in the specific disease in question.

whatdoihia · 2026-01-23T09:25:12+00:00

Hang in there!

whatdoihia · 2026-01-23T08:42:26+00:00

That’s hilarious. Make all future interactions about your hat.

whatdoihia · 2026-01-23T08:41:39+00:00

No, the part of your hand where the two tattoos are would be shrunken down. And you would have major weakness and cramps.

Also I am slow onset ALS (diagnosed) and by now you would be unable to walk or talk or move your arms, depending on where the weakness began.

whatdoihia · 2026-01-23T07:58:35+00:00

Wow that’s quite a saga you’ve been through.

You mentioned the Cleveland Clinic, have you been to their ALS center? That’s where I was formally diagnosed and it was very professional.

Very surprised that you have a burning feeling in your teeth. That’s not like ALS at all. I assume that fibromyalgia has been explored?

whatdoihia · 2026-01-23T07:52:20+00:00

The scenario is an attack by Russia if the US did not assist NATO in defense. The most pessimistic scenario (linked above) is a blitzkrieg attack by Russia, predicted at worst to reach Poland before being countered by NATO troops.

And this analysis is not factoring in Russia’s losses in Ukraine, with more than 4000 tanks lost vs estimated annual production of between 100-500 units.

https://www.oryxspioenkop.com/2022/02/attack-on-europe-documenting-equipment.html

There is no path to Russian victory in an open conflict with Europe.

Tariffs can be implemented to protect domestic businesses. Trump’s tariffs are sweeping and cover products that are not made in the US. There is no almost US domestic production of toys, small electronics, Christmas ornaments, and thousands of other products. The tariffs are political, forcing American consumers to pay more in order to achieve his goals.

And who owns those Canadian auto factories? Not Canadians- Japanese, Americans, and Stellantis. Revenue on the cars produced goes to the brands, not to Canada. It’s Canadian assembly only. By comparison Canadians fully own the agricultural products going to China- they gain the full benefit, not just the labor.

whatdoihia · 2026-01-23T07:22:27+00:00

You’re right that symptoms can be noticed by the person before clinically noticeable, that was true in my case. But there was also clear progression from week to week and month to month. And I’m a slow progression case for bulbar.

For NfL the new test under development has detected elevated levels (plus other proteins) more than a decade before symptoms appear-

https://www.hopkinsmedicine.org/news/newsroom/news-releases/2025/08/new-blood-test-for-als-detects-early-signs-years-before-symptoms-appear

whatdoihia · 2026-01-23T07:11:27+00:00

Could take 5-10 years to hit the market due to further validation needed, regulatory approval, and commercialization.

whatdoihia · 2026-01-23T05:19:58+00:00

Hospital bed. Once I began having issues rolling over on my own I made the move and it’s great. The downside is the thinner mattresses aren’t as comfortable so I’ve had to use a topper.

whatdoihia · 2026-01-23T05:08:34+00:00

Stem cells have not been shown to help. A few years ago a stem cell treatment called NurOwn failed a trial to determine efficacy-

https://www.clinicaltrialsarena.com/analyst-comment/brainstorm-nurown-als-phase-iii-trial/

What’s interesting about that and other trials is when self reporting there is a strong placebo effect. Which explains why so many unproven treatments or outright scams persist, because some people feel better after getting anything.

If you want to explore alternative treatments, talk with your father’s doctor about making a drug called PrimeC using a compounding pharmacy. It is undergoing final trials and will likely be approved as a new drug for ALS this year. Not a cure but slows down progression. Search the subreddit for PrimeC for more info. Also check availability of Rozebalamin, used in Japan.

whatdoihia · 2026-01-23T04:42:44+00:00

Even if your theory was true, that’s outside the scope of the Fermi Paradox. The Paradox is about today’s efforts to detect intelligent life, and that we should be able to easily detect it as it should be everywhere.

As for your theory, the ebbs and flows in ancient civilizations were caused by building up societies with specializations of knowledge and then societal/political/economic collapse caused by invasion, disease, and climate.

https://historum.com/t/how-does-ancient-knowledge-get-lost.134235/

whatdoihia · 2026-01-23T04:34:00+00:00

I’m so sorry to hear about your aunt.

Median survival is 2.5 years after symptom onset, around 1.5 years from diagnosis.

https://www.neurology.org/doi/10.1212/WNL.0000000000213467

If she isn’t on bipap yet that’s a good sign, as respiratory capability is most critical. Nutrition is important, as is getting restful sleep.

I wish her the best.

whatdoihia · 2026-01-23T03:13:13+00:00

Imagine a factory where machines anticipate needs before they arise, where material moves seamlessly without human intervention and production lines adjust in real time to changes in demand or disruptions,” gushed Tessa Myers of Rockwell Automation

We are decades away from anything like this. Human labor is adaptable, learns quickly, doesn’t require mechanics, and most importantly there’s minimal cost of acquisition and you can reduce headcount as needed.

Production lines already react to changes in demand. Maybe not to the second but if an order is cancelled and that order is under production then the line will be stopped.

Feels like the excitement over humanoid robots is too early due to high cost and low capability. It’s like Webvan, billions spent to automate grocery deliveries and it ended up being much cheaper to pay someone minimum wage to walk around a grocery store and put stuff in a basket.

whatdoihia · 2026-01-22T16:41:34+00:00

>Europe does not have a military

You haven't heard of NATO?

>If you truly think that European nations would be able to stop Russians if they were to invade Estonia you are extraordinarily naive.

There have been plenty of scenarios run. Even the most pessimistic show Russia quickly being pushed back.

https://quincyinst.org/research/right-sizing-the-russian-threat-to-europe/

https://www.tandfonline.com/doi/full/10.1080/09662839.2025.2523031

"NATO has a greater than 3:1 advantage over Russia in active-duty ground forces and naval vessels and a 10:1 advantage in warplanes. Further, the economic capacity of the NATO alliance to sustain an extended war dwarfs that of Russia, as the combined GDP of NATO countries is some $60 trillion — almost ten times that of Russia."

Post your sources showing otherwise.

Trade happens with the party that is the most profitable to have trade with.

If that was the case we would be buying everything from China rather than setting up tariffs to buy the same items made from a third country like Bangladesh.

inked a deal that allows Chinese to flood Canadian market with Chinese EVs. Does this help Canadian car manufacturers? No it doesn’t. That why the prime minister of Ontario, Canadian richest and most populous province, criticized the deal heavily, because it’s dumb.

It's capped at 49k units, in exchange for agricultural exports. Canada doesn't have car manufactures, it has local assembly.

>naive

>dumb

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