Bulbar ALS?

[ServerError]

A suspicious mole is scarier than a twitch in my humble opinion. The overwhelming majority of twitches can safely be ignored as twitching is a normal behaviour of the nervous system, but any suspicious mole needs checking out. Not that I think it's helpful to worry about either all that much. I think you do have regular health anxiety. ALS fears are super common among HA sufferers, who often interpret any twitch or odd sensation as their first step on the ALS road. ALS is the one rabbit hole I've not been down.

The thing is, you're not qualified to interpret published medical papers. Maybe sometimes ALS does start with twitching, but without muscle atrophy or clinical weakness (note, clinical weakness), twitching doesn't mean much.

[Mocadona]

I've been trying to focus on it not being a bulbar nerve, then I read all about twitching faces, cheek atrophy, chewing problems etc.

Do you have any of these? Are any of these related to the temporalis muscle?

Genuinely I haven't heard of twitching as a SOLE presenting symptom, but you've obviously read up on it more than me. The point I suppose is that Dr Orla Hardiman was trying to make as outlined in the Could This be ALS post is that they don't look for twitching without weakness, atrophy etc because it's just so common and very very VERY rarely is because of ALS. You have a twitch - yes, but without any other symptoms it's meaningless.

It's like a pancreatic cancer fear - it's generally symptomless in the early stages, does that mean every single person in the world should be worried and get scanned every week just in case? That's the logical extension of how the HA mind works and that's what's bonkers, not the fact that research into a very rare illness is a little bit scattered. If anything that shows you can't trust any of it, so why do you choose to only trust the bits that worry you and dismiss everything else?


And trust me "regular" HA is just as bad as this one - I've had them all!

[olivia0703]

Do you have any of these? Are any of these related to the temporalis muscle?

They are all things that involve the trigeminal nerve, which shows it can be involved in ALS. I don't mean to downplay anyone else's HA - I've had many other fears as well over the years - it's just that I think the ALS rabbit hole is especially gnarly as it's such a spectacularly cruel and hopeless disease.

[olivia0703]

Oops, I deleted the first part of my message when I quoted. I had written, thanks, guys. I wish I could say I know you are right, but my HA won't allow that. I certainly hope you are right and you make some great points

[Mocadona]

- it's just that I think the ALS rabbit hole is especially gnarly as it's such a spectacularly cruel and hopeless disease.

I said the same and then when I had a stomach cancer fear I said what I wouldn't give for an ALS fear now, at least I can test my strength with that for reassurance. It's really whatever one you have at the moment is the worst!

Just on that as well - if people want to be reassured by thinking twitching is never a presenting symptom we should let them be, good days are hard enough to come by when you're deep in the hole!

[kyllikki]

Oh, Olivia. Clearly more information isn't helping you.

All I can say is, you don't have ALS. You definitely have an irritated temporalis muscle, though.

[olivia0703]

I just need something for my brain to grab on to, some hope. Then maybe I can stop googling. Are you Danish, kyllikki?

[ServerError]

You say you need some hope to latch on to - how about the hope that you don't have ALS? How about the fact that your chances of ever getting it are really low? I mean, I know that's not a 100% guarantee you won't get it, but you said you wanted hope. I would take an extremely large amount of hope from the statistically low likelihood of me ever getting it.

[olivia0703]

It's different when you have an ongoing symptom though :( Plus I am 54

[ServerError]

Different in what sense? I mean, all symptoms are ongoing until they go away. If you have ongoing twitching without any signs of weakness or muscle atrophy, it's waaaay more likely to be something other than ALS. Also, 54 is still below the average age at diagnosis for ALS. Risk does increase with age, but it rises from an extremely low base, so it remains very low throughout life.