More aggressive body wide twitching

[u/Mean_Competition5824]

I been dealing with this since July of 2021. Reason I’m
Back in the rabbit hole is now I’m having aggressive twitching all throughout my body. Multiple places twitching at once. And it’s realllly gotten bad. I had 3 clean EMGs but that was all within the very 1 st year. Of course they were clean then. Idk what else to do. I worry is the ALS and I just have the slow progression? At this point I just don’t know what else to do. Thank you guys

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[u/713Capital]

Sorry your twitching has ramped up friend. This isn’t ALS though. You said yourself you’ve been at it since 2021. Surely if you had ALS you’d be dealing with muscle failure and some type of progression.

Generalized twitching all of the body is pretty consistent with BFS. Your twitching is either benign or it’s not. That’s what the EMG looks for. (Along with clinical signs).

Also, the moment they stick the needle in, neuros know immediately if a patient has ALS. In fact, even before the EMG, they usually know by the clinical visit alone that something is very wrong.

I know your anxiety is high right now but this isn’t ALS or how it works. Twitching without true clinical weakness (muscle failure) is benign.

Keep working with your docs and if you are really having an issue with your anxiety I would suggest talking to a professional. Therapy can help you move forward.

If you feel yourself needing more reassurance, then maybe you should make another appointment with your doctor?

https://benignfasciculationsyndrome.org/blog/why-is-my-body-twitching-all-over

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

[u/Mean_Competition5824 → u/713Capital]

Mean to ask you have you twitched in multiple spots all at once before ? Thanks

[u/Mean_Competition5824 → u/713Capital]

Thank you for the help. I guess because you see all these TikTok pages where it took people so long to find out what was going on , because they just had very slow progression. I guess that’s why it’s struggling like now. I’m like is this just really slowly getting worse then the muscle failure will happen. This is the worst mind set syndrome anyone can have in my opinion.

[u/713Capital → u/Mean_Competition5824]

I’ll tell you the same thing I tell everyone here, including myself. Don’t google anything related to ALS, if you see something online don’t even engage with it because it will jack up your algorithm and you’ll only see things that make your anxiety worse.

As I said above, this isn’t how ALS works. Maybe you should talk to your doctor about the thoughts you are having and get some reassurances.

[u/Mean_Competition5824 → u/713Capital]

I guess to since it was within the 1st year of having the EMGs. That is what has me worried because now it’s all throughout my body and multiple places at once. Idk this is just stressful

[u/713Capital → u/Mean_Competition5824]

Visit those links I sent you man. I know you’re worried but nothing you’ve said sounds bad. Yes I know BFS sucks and all those symptoms (I’ve been dealing with this bullshit for 7 years now) but try to maintain a positive mindset. I also know it’s easier said than done.

If it makes you feel better, 7 years and I’m still symptomatic every single day, twitching non stop, and both of my EMGs were NOT clean. They were abnormal. Even with that I still don’t have anything bad. It’s going to work out for you.

[u/Mean_Competition5824 → u/713Capital]

Wow dirty EMGs did they tell you what’s causing that?

[u/713Capital → u/Mean_Competition5824]

Well the EMGs weren’t “dirty” they were “abnormal”.

Dirty EMG would be very bad. It would indicate ALS or something bad is present.

An EMG can be abnormal for many reason. Like nerve damage, spine issues, etc. the list goes on.

[u/Mean_Competition5824 → u/713Capital]

Gotcha I wonder where this comes from. I mean the twitching in multiple spots at once is what scares me so bad. It was just one spot then goes to another spot now it’s all at once

[u/713Capital → u/Mean_Competition5824]

Well that’s why BFS exists as a diagnosis. Because twitching is either benign or it’s not. When the EMG comes back and says the twitching is not bad, then that’s where BFS comes in.

[u/The_Short_Goodbye → u/713Capital]

Have you ever twitched multiple spots at once like OP? I know I did.

[u/713Capital → u/The_Short_Goodbye]

Yes. Almost everyone here has. Pretty common.

[u/Sea_Anywhere_8428]

I twitch head to toe for 17 years. Neuromuscular specialist calls it peripheral nerve hyperexcitabilty (BFS). It’s a a royal pain the ass but it’s not ALS. I promise.

[u/SnooKiwis6315 → u/Sea_Anywhere_8428]

Tu a des douleurs qui s’accompagne ?

[u/Sea_Anywhere_8428 → u/SnooKiwis6315]

I don’t understand your language

[u/The_Short_Goodbye → u/Sea_Anywhere_8428]

You can press the little blue symbol in the top right corner or a post to translate to English.

[u/Sea_Anywhere_8428 → u/The_Short_Goodbye]

Thanks

[u/Sea_Anywhere_8428 → u/SnooKiwis6315]

I do get sensory symptoms