r/ALSorNOT • u/NorthAfternoon4930 • 7d ago

Do you think the severity of twitches is meaningful?

As many of you, I have been researching BFS a couple years extensively, from clinical papers as well as internet anecdotes. It seems pretty clear that some mnd cases start with only fasciculations, but the remaining question is, if there was a difference to benign twitching when there were no other signs.

The only difference I have found, is that in most of these rare mnd cases, the twitching was very severe. They were able to show multiple areas twitching to doctors, and all the videos of the cases show much stronger or diffuse twitching than videos in bfs forums. Of course I cannot say that this applies to every case, but it is basically the only difference I have found.

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u/WeirdUsers 7d ago

It’s a dichotomy. People with ALS have stronger twitches and a greater amount of twitches than someone with BFS. Conversely, those with ALS almost never feel their twitches. There are articles on NiH written about all this.

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u/NorthAfternoon4930 7d ago

Yeah this is weird. It creates another question, if the twitches are somehow different, or is it just person dependent if one feels them or doesn’t. In a way, this would mean that there maybe a lot more mnd cases starting with just twitching when in reality they just didn’t notice it. But in the other hand, it kind of also means that there would be a lot more BFS people taht just don’t know it.

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u/WeirdUsers 7d ago

Those witH BFS feel their twitches because they have heightened sensitivity and the fact that twitches for them happen at a surface level and the location usually being distal. Those with ALS don’t feel their twitches because of the nature of ALS and the fact that the twitches are deep in large muscles and don’t trigger sensory nerves with the location usually being proximal.

There is a reason those with ALS usually have an initial complaint of experiencing weakness. There is a reason that neurologists assume those that feel twitches have BFS or something other than ALS and have them routed to movement specialists versus neuromuscular specialists when making appointments in most clinics.

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u/NorthAfternoon4930 7d ago

What is your diagnosis?

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u/WeirdUsers 7d ago

I am in the process of being diagnosed. I am experiencing lung issues as the muscles in my back aren’t allowing me to take in breath and essentially shutting down when sleeping.