Media distresses by casually naming twitching and other symptoms in whatever order

[Ren-in-Black]

First off, let me just say that Brian Wallach and his wife Sandra Abrevaya are absolute heroes and I could not do what they've done if I were in their shoes.

Their recent segment on CBS Sunday Morning brought up older feelings of distress however because when they discussed how Wallach discovered he had ALS, first they say he had a cough. But then they mention symptoms that Wallach had noticed but didn't tell his wife. He mentions twitching first. They even cut to a close-up of his arm twitching during the interview. Secondly he says his left hand felt weak.

Maybe it's too fine a point for the general public, but without knowing what I know now, I think I would have interpreted that to mean: his hand twitched, then he felt weak, but he ignored those. Then when his cough got bad he went to the doctor. Twitch then weakness then cough.

Most likely this is the fault of the editors, something they would not have noticed. But it brought up all the old feelings for me. "This twitch in my left hand, that came out of nowhere, is a foreshadowing, a precursor, a sign of what is to come. One day I will wake up and not be able to move this hand muscle."

I just wish the media, as well as ALS informational and advocacy websites, would be more careful about this. So many casually mention that people will notice twitching, cramps, and weakness at first onset. Rarely do you see it said in plain language that twitching is meaningless in the absence of motor function failure. Which has become the most important 10 words in the world for me over the past year.

Thanks for letting me vent.

[Speranza]

My Dad had MND. I don't remember anything twitching other than his eyes.
Of course mine twitched for ages.

I don't have MND.

[Fishbomb]

I think that the average person who isn't hypervigilant or anxious about their body is sometime unreliable when reporting first symptoms. They pay no heed other than "That's weird..." and move on until things add up enough to bring them to a doctor. Sometimes it's actually doctors who bring issue to the attention of their patients via routine questions or observations about function.

[Ren-in-Black]

Thank you for your replies Speranza and Fishbomb.

I think that the average person who isn't hypervigilant or anxious about their body is sometime unreliable when reporting first symptoms. They pay no heed other than "That's weird..." and move on until things add up enough to bring them to a doctor. Sometimes it's actually doctors who bring issue to the attention of their patients via routine questions or observations about function.

Fishbomb, do you mind if I ask you to clarify here? Are you saying not to put too much stock into ALS/MND patients reporting twitching as an early symptom?

My story: I was cleared by my neurologist, but as a 46-year-old white male who suddenly had twitching in his hand (the split hand area) for no clear reason, I got very scared. Seeing the CBS segment brought up the old fears and the continued twitches do still give me a dark feeling. I know logically that it must be health anxiety but it's been hard to stand firm against it. I have to keep reminding myself that this twitch is not "hidden" ALS and that such a thing is not even possible with a normal EMG.

[Fishbomb]

Yep- exactly that. Apologies for the lack of clarity. They may think twitching was the first sign, but was actually a variety of other things they dismissed as getting older, out of shape, etc and they didn't make the connection. ALS twitching comes after the connection from brain to muscle is compromised- clinical weakness is very obvious, and an emg will detect that damage. Twitching without clinical weakness is something else.

[Ren-in-Black]

Thanks so much Fishbomb. That's just the kind of thing I need to be reminded of to help me manage my HA. Wish this thinking was more prevalent on the internet. Instead it's usually, "I read about this one guy..."