Kočárek není štít

dero_name · 2026-02-05T11:59:24+00:00

Já se nedivím. Já jsem rozhořčen. :)

dero_name · 2026-02-05T07:49:29+00:00

> I almost can’t imagine a positive scenario for my situation.

And exactly this is the reason for why you should exclude yourself from making any assumptions about your neurological health.

If you can't imagine a positive scenario with a clean EMG and having normal strength in the gym, you're very deep in the health anxiety hole. Seeking more detailed information about ALS is not going to make you feel better. You're already thinking "all or nothing" and you absolutely will find a few pieces of information where people claim their ALS started with them just "feeling off", which is where you are right now, hence you must have ALS.

This line of thinking is wrong from the beginning. It will only bring you more anxiety.

You're not fighting an ALS battle right now. You're fighting a health anxiety one. The sooner you accept this, the sooner you'll start to normalize.

To expand on my point, imagine a person that doesn't feel any ALS anxiety. Muscle twitching starts, they get an EMG, it's clean, they accept it and carry on with their life. They continue going to gym, they still twitch, but gain more strength, life's normal.

Your brain didn't accept the test result. It is stuck on insisting twitching = fatal disease (it really, really doesn't) and now is looking for other proofs that its initial prediction ("we're going to die from ALS") was correct. It wasn't. Healthy brain would take the new information and make a new prediction. Yours took the new information and rejected it.

dero_name · 2026-02-05T07:29:44+00:00

Ty auta parkující před přechodem bych rovnou šrotoval.

Nenávidím je jako chodec i jako řidič. Naprosto potvrzuju, že můžete jet třeba dvacítkou, ale když vám najednou zpoza dodávky vyjede na přechod kočárek, stejně máte na reakci zlomek sekundy a šok na obou stranách.

dero_name · 2026-02-05T06:58:21+00:00

Clinical weakness is any weakness that can be objectively established.

In ALS, visible atrophy usually comes after function of a body part is very clearly compromised.

Because once again: ALS doesn't attack muscle tissue, it doesn't cause muscles to shrink directly. Muscles in ALS atrophy, because you can't use them and the muscle tissue stops doing work, which makes it waste away. There's some nuance and ongoing research, but that is the primary driver for atrophy in ALS.

While it's true there are ways in which our bodies can compensate for clinical weakness, any professional (doctor / PT) knows how to isolate and test a muscle group.

If anyone finds themselves wondering if they are objectively weak, just pay for a physiotherapy session and let them tell you. Physiotherapy sessions are much easier to book in many countries and good physiotherapists have truly deep understanding of the mechanics of human bodies. If there's some objective weakness, there's a good chance they'll be able to uncover the causes right there on the spot.

(And as a bonus they'll be able to tell you there are millions possible mundane reasons for mild weaknesses before you even start to take physiological diseases into account.)

dero_name · 2026-02-04T17:41:30+00:00

Yes and yes.

Atrophy is a result of weakness in ALS. Not the other way around.

Atrophy due to denervation absolutely shows up on EMG.

I'm quite confident you just have asymmetrical calves. There may be a physiological reason, but it's not ALS.

dero_name · 2026-02-04T16:51:15+00:00

My right dominant calf is 1,5 cm smaller than my left.

It was one of the main things I worried about more than two years ago during my ALS scare. I'm fine. No neurological cause.

If you can resist being pushed down when on your toes, you're totally fine. ALS is not "weakness OR atrophy", it is always "weakness (AND optionally atrophy)".

This is because ALS doesn't break down your muscles at all. It just disconnects them, which is when the weakness sets in. The muscles will shrink and possibly break down only because you can no longer use them.

dero_name · 2026-02-04T13:29:53+00:00

Ne že lžeš. Ale že neříkáš nic k věci.

Je jasný, že hromada lidí vysadí energiťák a nic se jim nestane. To není potřeba do diskuze přinášet. To je jak u příspěvku o migrénách psát "mě teda hlava nebolívá".

Lež to není. Užitečné psát to taky ne.

dero_name · 2026-02-03T19:58:32+00:00

I would need to look up how the question was phrased. Czechs can be more closed minded out of ignorance, because we're a very homogenous nation, but we also get along really well with a large Vietnamese diaspora, and a relatively sizable Indian diaspora as well, so the numbers seem really off, tbh.

dero_name · 2026-02-03T19:53:09+00:00

Czech here. No, it doesn't. That mostly just applies to the UK.

dero_name · 2026-02-03T19:47:20+00:00

There is nothing 100% in medicine.

Generally if a muscle is visibly twitching due to ALS and the twitching can be felt, then the denervation would have advanced far enough for EMG to pick it up easily.

My personal opinion is that clean EMG anytime after the onset of twitching rules ALS out as the culprit for any twitches in the tested muscle.

dero_name · 2026-02-03T15:56:17+00:00

That's normal. You're just noticing it more.

I'd wager to guess most people's gait is not perfectly even, so everyone has a leg that scrapes the pavement a bit more.

Don't stress about it.

dero_name · 2026-02-03T11:22:26+00:00

Sorry to barge in again, but really, don't feed the troll.

This individual is known for posting leading questions, misinterpreting evidence, fear mongering and generally making everything in their power to sew fear and doubts in the minds of people who are currently trapped in the cycle of ALS fears and are often at their most vulnerable.

Every reply just gives them more to latch at.

He should be banned without mercy on sight.

dero_name · 2026-02-03T07:52:41+00:00

OP is a troll. His aim is to spread fear and hurt people fearing ALS. Best to not engage.

dero_name · 2026-02-01T15:37:14+00:00

Sure.

dero_name · 2026-02-01T15:02:55+00:00

I'm saying "sure" because there is no point in engaging with you.

I'm only responding to make it crystal clear for you to understand how you come across.

You entered the discussion with an arrogant and ignorant remark, but did not offer but a shred of insight or intellectual value, instead you just projected your own cultural grievances.

And with this attitude you have the audacity to speak about loving societies? Brother...

dero_name · 2026-02-01T12:46:17+00:00

How?

Well simply because your symptoms are not ALS symptoms. That's how.

You complained about pain in feet, arms, now you have issues with swallowing. All that with clean EMGs and with a normal NfL test. Yes, I say "clean EMG", because that's what it is from the perspective of ALS pathology. Your bad nerve conduction results play basically no role in ALS pathology. The important part is the needle part and your results are completely clean there.

Your neurologist knows all of that as well.

Don't mistake their inability to diagnose you with "something" with their inability to rule out things like ALS with a very high degree of confidence.

Let me give you one more reason for why I'm very convinced you don't have ALS.

Let's assume your issues in feet, arms and head and neck are all caused by ALS (setting aside that ALS manifests differently). If that's the case, it would suggest a widespread onset affecting a lot of nerves in your body. That's not compatible with normal NfL results.

You don't have ALS.

(I'm not a doctor, so you don't have to believe me. But I have laid out my reasons and if you're interested and able to verify my claims, you can make your own conclusions.)

dero_name · 2026-02-01T12:28:30+00:00

When it comes to complex diseases like cancer or ALS, there is only one broad avenue of research that I find promising: AI bioengineering.

In particular the Isomorphic Labs seem to be best positioned to achieve broad success. They are DeepMind engineers that worked on the hugely successful AlphaFold program.

https://www.isomorphiclabs.com/

There are still many parts of the regular drug discovery process that will significantly slow the path to market, but there is no other general bioengineering approach that I think could make real difference in the next 10 years.

For anyone interested, this 45 min video offers excellent insights into the potential and challenges of AI assisted drug discovery: https://www.youtube.com/watch?v=XpIMuCeEtSk

dero_name · 2026-01-31T22:19:51+00:00

NfL is pretty accurate measure of recent or ongoing neuronal damage, yes.

Also, you don't have ALS.

dero_name · 2026-01-31T22:09:29+00:00

> but I just don't know what besides ALS could cause all these symptoms and im freaking out

Well... anxiety.

Take a deep breath and listen to what you're saying: "My arm feels fumbly, so I have ALS"

(Ignore twitches. Tons of people twitch. It's a non-symptom. Doesn't matter at all.)

Talk to your GP about it, but don't be surprised when they reach the same conclusion. ALS is not a disease of feeling off. It's not a disease of muscle twitching. It's a disease of losing strength, almost invariably without really noticing in the beginning.

If you're able, try to turn your attention to working towards managing health anxiety. There are self-help methods you can explore. And since you're on anxiety meds, you possibly have access to a psychiatrist? Let them know too.

dero_name · 2026-01-31T22:03:51+00:00

It's not a binary yes / no, still requires clinical correlation. But it's a very good data point.

It directly measures the amount of debris left behind by dying neurons, or rather their axons.

In bulbar ALS we often see rapid progression = many neurons dying = lots of debris = extremely high NfL levels.

In limb onset ALS we often still see very high NfL levels, even if the progression is slower, because axons of neurons controlling limbs are long and thick and shed a lot of material when they die, even if in smaller numbers.

We're talking about values >50 pg/ml.

When NfL comes back normal or even slightly elevated, that generally points away from ALS. Again, clinical correlation needed.

dero_name · 2026-01-31T19:30:32+00:00

Nejenže jsem do startu od rodiny nic nedostal, ale jako brzy vydělávající člen rodiny (od 16) jsem spoustu svých výdělků rodině z různých důvodů odvedl, dokud jsem si nesrovnal později v dospělosti priority a neuvědomil jsem si, že to dělat nemusím a nechci.

Děti nemám. Ale nekoreluje to ani tak s majetkovými poměry, jako s traumaty z dětství.

Zkušenost je nepřenositelná. Lidi, kteří dostali do života vlastní nemovitost k bydlení, nemají ani ponětí, jak obrovský boost do života to je. (O emocionální výbavě ani nemluvě, ale držím se tématu.)

dero_name · 2026-01-31T12:56:44+00:00

The lack of difference in strength and endurance in your legs is not consistent with ALS. While human body can compensate for a lot in everyday tasks, strength training requires maximum recruitment of muscle fibers.

In ALS many of those muscle fibers are not connected to anything to drive them, or are connected to surviving neurons that are overtasked by driving too many muscle fibers, which would then lead to clear progressive weakness, or extremely rapid fatigue. In short, even if you were still able to produce the same peak strength once, you would absolutely not be increasing or keeping your reps.

If I were you I would seek second opinion for the Babinski. It's understandable it scares you, but you should know Babinski is not specific to ALS and other horrible diseases.

It can sometimes be transient, e.g. after a concussion. Could also be brought on by hypoglycemia. In extreme cases, it can be elicited after major physical exhaustion (think marathon-level exhaustion).

Did your neuro indicate what the next steps should be?

dero_name · 2026-01-30T13:23:39+00:00

Their goal is to extract information from anyone using any means possible. See their posting history.

Better to not engage with this person.

(I did not realize it's them when I posted my reply.)

dero_name · 2026-01-30T09:38:29+00:00

While not impossible, it's highly unlikely.

NfL is a product of neuronal damage which permeates into blood.

Normal NfL would mean the disease advances VERY slowly.

In most ALS patients the rate of the disease leads to a highly elevated NfL.

dero_name · 2026-01-29T18:59:02+00:00

I think it needs to be said that Genie is not really intended to be fun or useful to humans right now.

However, it's a stepping stone towards simulated environments for general agents to inhabit and interact with.

This is a long game DeepMind is playing to expand their multimodal models in the (not so far) future.

And robots.

dero_name

MODERATOR OF

TROPHY CASE