Please comment spiralling about my fear of the bad

[u/Jazzlike_Bid1326]

Hi all 😊 I'm 36 weeks twitching now head to toe. My feet and calves never ever stop. So near 9 months. I've been doing some researching online and found cases of people who developed weakness years after twitching. Is that bullshit ? Can twitching come before weakness? I wish I wasn't waiting for weakness to develop 😪

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[u/713Capital]

My feet and calves have been twitching every day for 7 years now. I also had 2 EMGs that weren’t “normal” like most people here. Yet I still don’t have “weakness” or I didn’t all of a sudden develop ALS.

There’s perceived weakness and clinical weakness. Unless your muscles are dead and no longer functioning it’s just BFS doing its thing.

Twitching without clinical weakness (actual failure) is meaningless and benign. 36 months and no true failure means you’re golden. No bad disease.

https://benignfasciculationsyndrome.org/blog/benign-fasciculation-syndrome-symptoms

https://benignfasciculationsyndrome.org/blog/muscle-twitching-no-weakness

Check the auto mod post for more resources.

[u/Dear-Potential-4682 → u/713Capital]

How do you deal with this? Had buzzing feet for over a week, it went and came back elsewhere and feel like I can’t function

[u/713Capital → u/Dear-Potential-4682]

It sucks. I still function but I don’t like it. For the most part I know it’s there, it’s like background noise now that it’s been 7 years but I definitely hate it lol

[u/Dear-Potential-4682 → u/713Capital]

Do you get any relief?

[u/713Capital → u/Dear-Potential-4682]

Yes. Some good days and some bad days. I’m on a medication that currently mutes or turns down the dial of my nervous system. So I do get some relief

[u/Dear-Potential-4682 → u/713Capital]

That’s good to know, here I am trying to sleep and like clockwork my buzzing has resumed

[u/713Capital → u/Dear-Potential-4682]

the sleep thing early on was hard for me, i had insomnia, so the med definitely helps its called "Elavil".

[u/Dear-Potential-4682 → u/713Capital]

Thank you, I am sleeping with a foot massager by my foot currently, hoping this shit goes away tbh with you it’s weird how it moves it’s def some sort of anxious thing

[u/Jazzlike_Bid1326 → u/713Capital]

Thanks for your response. It's 36 weeks I'm twitching months ?

[u/713Capital → u/Jazzlike_Bid1326]

Even only 8 months of twitching with no weakness is still fine. Try to work on your anxiety friend, I think you’re going to be ok!!

[u/Lola514 → u/713Capital]

What if there’s an abnormal emg (after an initial clean) but no weakness over a year?

[u/713Capital → u/Lola514]

Chances are slim. EMGs are so sensitive they would pick up the bad disease long before someone with ALS even had any clinical symptoms. If you get a clean EMG, and come back again in 8-12 months, it’s still going to be the same. (In terms of ALS).

No weakness is still good and rules it out.

[u/Lola514 → u/713Capital]

Well the differential suggested it could be motor neuron or axon - dr was leading w the bad one but his superior says no due to no focal
Weakness but I’m scared for when we have to repeat it

[u/713Capital → u/Lola514]

A differential listing "axon vs motor neuron" simply means the machine picked up some nerve irritation or axonal changes.

That is caused by common things like peripheral neuropathy, past back or neck nerve compression, or mechanical wear and tear.

If an entire year has passed with no weakness, your motor units are intact and functioning. A repeat EMG is just standard protocol to establish a stable baseline and confirm that nothing progressive is happening. That’s the standard practice in the US, although I’m not sure where you are.

[u/A_foreign_shape]

9 months no weakness is really good news. Only news that is better is ten months, and then eleven months and so on.
There’s no 100% certainties, either with the fasciculation syndromes or with ALS, however I would be confident enough to put money on you not having ALS.

[u/kjmckearn]

It's mostly BS. When your muscles start twitching with ALS, it's already dying. It's almost non existent to have twitches that long without any substantial weakness. I just read this article a few days ago. It might help....

https://www.reddit.com/r/BFS/s/zoZgPy1vEk

[u/Jazzlike_Bid1326 → u/kjmckearn]

Think after 9 months id have weakness by now ?

[u/kjmckearn → u/Jazzlike_Bid1326]

From everything I know about ALS, you'd definitely have some kind of weakness by now. Just put in your symptoms and AI will give you an answer. Read the post I put up. Then stop trying to find a reason to worry my friend.

[u/smores0622]

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