MND fear

[Hypo84]

Based on those symptoms, if you have it then I have it too, as I also have right foot twitching, right calf twitching, but also right and left biceps and sometimes in forarm , stomach, back, eyes...

[Worried_91]

I hate it! Have you seen a Dr? How long have you had it? Mine's been months now and I take supplements so don't think it can be a deficiency l.

[Hypo84]

I've been to doctor in March when I didn't have most of these symptoms, just twitching in biceps and occasionally in some other parts, but it wasn't constant and he dismissed it (I've been twitching since January 2022 every day). Now I have twitching in all those muscles I mentioned + I started having excess salivation in mouth which is much more annoying than twitching. Drooling in sleep (wet patches on pillow) + difficulty talking when I have so much water in my mouth.

Haven't been to doc again.

Anyway, in a tough spot, same as you.

[Worried_91]

Ah sorry to hear you've been dealing it with it for so long. But also as it has been that long I'm sure you'd be having noticeable weakness if it were sinister? I'm just so done with this fear now.

[Hypo84]

Yeah, I guess so. Zero weakness so far. Just right calf tightness that is sometimes better sometimes worse and twitching. This excessive saliva is more annoying but I am trying not to go down bulbar ALS path as, no slurred speech, and I don't think I am that special to have the rarest form of the rare disease presented in a non common fashion.

[Worried_91]

That's reassuring and yeah I feel the same. Twitching but I manage ti go to the gym and run and train legs etc. But I feel like im waiting for a trip on the treadmill or weakness in my ankle whilst squatting etc which will confirm my fears. By the sounds of it though, you're all good

[Hypo84]

I don't think this is how MND diseases work. I do think that one part of your body would suddenly become weaker but I don't think that you would have months of twitching before that.

My rational part of the brain thinks that whoever says they were twitching long before they got ALS diagnoses, on forums they either:
1. Had BFS due to anxiety or whatever and then coincidentally developed ALS
2. Maybe they are lying as people do that often in real life, why would forums be different

And I understand that there might be a case study where someone had that particular disease progress, but then we are talking about disease which hits 1 in a million bellow age 40, and then, maybe couple of % of people have unusual course of the disease, which puts the odds at 1:10 million or less.

This is rational response, now I can continue ruminating over this disease.

[Worried_91]

So I had a reply from my gp saying the twitching is most likely to be caused by stress/anxiety and or tight shoes. That seems rational but I'm still concerned here whilst my right foot and calf is twitching away. He also said to be concerned if I notice weakness and/or muscle loss. I'll be looking out for that now. I just wish the twitching would stop.

[Hypo84]

Don't look out for it, you will drive yourself crazy. Weakness will be so noticeable, like you won't be able to miss it. Muscle loss, again, you would notice that. One muscle would become much smaller than the other. We are assymetrical so one is always smaller than the other, but it would become much much more visible.

Try to live your life and only worry if you start falling down randomly.

[Worried_91]

This twitching is driving me nuts. Been to the gym, managed a 2 mile run but my foot and calf I'd twitching like crazy. Toes moving on their own too, hard to believe this isn't MND. I feel so defeated.