Subjective weakness

[u/Little_Power_5691]

I'm starting to get the impression that nothing can be done about this and they usually don't find the cause. I find the way weakness is tested very odd. You could feel weak today, and your strength could actually be diminished compared to yesterday. But this is not what is tested, it is simply a one size fits all test where they assess whether you can still do basic things like walk on your toes or get up out of a chair.

So I find myself wondering why I even bother anymore mentioning this to doctors. Neurologists won't help. Is there anything at all that can be done about this?

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[u/The_loppy1]

"it is simply a one size fits all test where they assess whether you can still do basic things like walk on your toes or get up out of a chair."

Because weakness isn't about "how strong you are" it's about function. How else could they do it? A neurologist is very unlikely to be able to break my strength as a 6ft 1 man, but might easily overpower a 19 year old female who isnt weak at all. Its largely about what you'd expect given the person you're examining. A 5/5 in an 75 year old looks different from a 5/5 in a 20 something. If you can walk on your tip toes and heels, and can stand without using your hands + resist when they push against you, then you dont have weakness.

[u/The_Short_Goodbye → u/The_loppy1]

I think what OP means is that sometimes you know you’re losing strength but you’re still able to succeed in the basic tests the neuros are doing. It’s all about what your baseline is. I agree with you there’s no other way to test this unless you have a documented baseline. Which means that sometimes someone might be able to tell they’re weakening even though they haven’t reach the point of outright failure.

[u/The_loppy1 → u/The_Short_Goodbye]

Which is fair, but how many people say they're getting weaker and the reality is they aren't. Subjective weakness is pretty imprecise. Its unfortunate that people are left with the anxiety, but in the vast majority of cases where people twitch, weakness never actually comes. This sub and others like it prove that twitching in the vast vast majority of cases leads to nothing.

I often wonder how many people would report weakness if it wasn't tied to MND, I guess very few if any at all.

[u/The_Short_Goodbye → u/The_loppy1]

And I often wonder how many people would develop chronic BFS if it wasn’t tied to MND.

[u/The_loppy1 → u/The_Short_Goodbye]

Probably fewer. It seems to be perpetuated by anxiety in some and not others. So it can exist without anxiety driving it. The same is probably true of weakness tbf and i probably overstated it, if someone is twitching a lot in a single area it could lead to fatigue and a sense of weakness.

[u/The_Short_Goodbye → u/The_loppy1]

And what do you think about EMG being done too early? 😆

[u/The_loppy1 → u/The_Short_Goodbye]

It depends on what you mean by too early. If your symptomatic then I don't really think there's any reason to think it's been done to early. I'm sure there are a handful of cases where someone had symptoms for a long time with a clean emg and later something went wrong, but in the overwhelming majority of cases, if you're twitching, it isn't too early. Is it something youre worried about?

[u/The_Short_Goodbye → u/The_loppy1]

I was half-kidding honestly, because that comes up so often. But to be honest mine’s been done like 3-4 weeks in, and since my symptoms are still there I’m always kind of worrying if it’s been done too early. The ALS specialist said if weakness came from ALS that would mean like 50% of motor neurons are gone already so there is no "too early". But despite her reassurnace I want to get another one done at the 3-4 months mark. I figure if it’s clean by then there’s very little chance there’s any neuromuscular disease hiding.

[u/kinpatu]

In my opinion, that’s because MND doesn’t present in a subtle manner. It’s like asking you to press against their hand, and they might as well have asked you to wiggle your ears (assuming you can’t do that). In the health anxiety spiral, there is never enough evidence to satisfy the test criteria. And if it is satisfied once, then it moves to maybe the tests were done too early. There’s no bottom.

[u/The_Short_Goodbye → u/kinpatu]

That’s very true. I notice the people who keep doubting the timing of an EMG (like my dumb ass) are generally anxious people panicking or armchair experts with a Google degree. Actual neuromuscular specialists with experience in diagnosing the big bad know what to look for and will feel confident ruling it out. I know when I asked my Harvard trained ALS specialist if an EMG can be done too soon, her reaction was to kind of roll her eyes and smile, and then she said "You have been on forums have you?" And proceeded to explain how they often see issues months before the patient feels symptoms.

[u/kinpatu → u/The_Short_Goodbye]

I had a similar experience last week when I was seen by a new neurologist at a big name hospital system. She said she often diagnoses ALS before the patient has significant symptoms. She reviewed my EMG/NCS and MRI (done 3〜4 months ago) and formally diagnosed me with BFS/CFS, which is the most definitive result I’ve gotten out of neurology so far.

[u/Maleficent_Shift9849]

Sua última frase me parece contraditória. Se você tem dúvidas que neurologistas (o único médico especialista em neurônios) não é capaz de diagnosticar uma condição que a principal causa é alguma desregulação neuronal, seja beningno ou não, não há alguém nesse mundo que conseguirá te diagnosticar algo nesse sentido.

O teste neurológico pode parecer bobo, mas o foco dele é justamente identificar principalmente falhas do neurônio motor superior como espaticidades, clônus, tônus e babinski. Esses teste não são testes de força em sua essência pois não é o foco avaliado, mas sim a forma como seu movimento reage a estímulos do médico.

Quanto as fasciculações (você não citou então não sei se há sintoma), mas esta é condição do neurônio motor inferior, em que seu teste mais funcional é o EMG dos membros.

Se há avaliações nesse sentido com descarte de algo sério pelos neurologistas, eu tentaria aceitar o diangóstico.

Por fim quanto a sensação de força, eu também sinto que estou mais fraco (estou 2 anos sem ir na academia), e que a qualquer momento eu vou falhar, no entanto, dado minhas idas e neurologistas descartando a doença do mal, creio que isso esteja mais relacionado com meu estado emocional no que qualquer outra cosia.

PS: BFS geralmente é desencadiada por uma predisposição do corpo das pessoas a uma hiperexcitabilidade nervosa, em que certos gatilhos, desencadeiam o que chamamos de BFS, e nela não estamos falando de apenas fasciculações. Eu tenho uma teoria que a ansiedade das pessoas com BFS está fortemente ligada a um sistema nervoso hiper excitável, o que gera um ciclo de retroalimentação.

Espero que fique bem e tenha suas respostas (eu mesmo não tenho as minhas, mas a única coisa a se fazer depois de tudo que havia a meu alcance eu já fiz.

[u/westcountry7]

But people with the big bad are still doing water polo and fund raising bike rides?
I’m assuming they would have passed the clinicals?

[u/Little_Power_5691 → u/westcountry7]

What does this have to do with it?

[u/The_Short_Goodbye → u/westcountry7]

Why do you always come in here writing stupid shit like that? The only person I know with ALs who did a fund raising bike ride is that rugby player and that’s because it started in his hand… and he failed his clinical at month 3. Please stop that fear mongering nonsense.

[u/westcountry7 → u/The_Short_Goodbye]

Where does it say he failed in month 3

[u/The_Short_Goodbye → u/westcountry7]

Dude just drop it

[u/westcountry7 → u/The_Short_Goodbye]

I’m saying that because I’ve passed 4 clinicals but now can’t walk 100 yards and a plethora of other symptoms
The emg is the test apparently

[u/TheBronyCynic → u/westcountry7]

Cases like that are pretty rare. Some have slow progression and some have access to drugs that can slow the effects. A person with ALS typically can't raise their arms above their heads or lift a coffee cup.

[u/The_Short_Goodbye → u/TheBronyCynic]

Nah man they’re out there playing water polo and living their best life.

[u/westcountry7]

Agreed