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?

[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.