Scared of ALS - new realisation

[AriaRen]

Hey guys

Me again, sorry. Just had a realisation -

I first got some twitching in May 2020, it started in my feet. That's when my health anxiety really kicked in. I forgot that it didn't start in my legs right away, so I went back on my old posts on another HA forum, and have realised my legs didn't start twitching until December 2020. My arms started in May 2021, and now my temple Sep 2021. I feel like this is progression, and I'm super scared. Because GPs keep saying my bloods/reflexes are okay, I've not had an MRI/EMG etc, so there's no guarantee that this isn't something serious. It can't be a deficiency, as my bloodwork would've shown that, so it needs to be something neurological. If it was just anxiety, I'd have had atleast 1 day without twitching, but I haven't. They've slowly spread throughout my body. I'm super anxious right now and I have no clue what to do.

 

[Phillies Phan]

One thing you’re missing. Sounds crude, but think of ALS like an assassin. It “shoots up” one area and progressively makes certain that its “dead”, then moves on to its next “victim” (body part).

You have twitching but NO actual weakness or reflex issues. That’s not how that disease works. By now you’d have very noticeable actual, obvious weakness in your feet if not other areas as well. AND YOU DONT.

No realization here, just an active HA soaked mind, possibly fueled by COVID

 

[AriaRen]

One thing you’re missing. Sounds crude, but think of ALS like an assassin. It “shoots up” one area and progressively makes certain that its “dead”, then moves on to its next “victim” (body part).

You have twitching but NO actual weakness or reflex issues. That’s not how that disease works. By now you’d have very noticeable actual, obvious weakness in your feet if not other areas as well. AND YOU DONT.

No realization here, just an active HA soaked mind, possibly fueled by COVID

I definitely think being laid up with covid hasn't helped.

I just hate how none of them ever disappear, I feel like it's just more and more all the time, and I'm scared my GP is disregarding real issues. There's not much I can do about it, I just hate it so much.

Thank you for the reply

 

[Loki83]

Two or so years ago I was laying in bed and my left arm started to twitch. Against my better judgment I googled muscle twitching and convinced myself it was the start of ALS which of course shot my anxiety to a 10/10. The following days and weeks more muscles started twitching which of course put anxiety into overdrive. It got so bad that I would wake up in the morning and my arms and hands would jerk immediately. I started to convince myself that I was losing muscle strength because I’d drop things and I felt like I barely had the energy to get though the day. The anxiety gave me such bad stomach pains that I drove myself to the ER, where they did scans and found nothing. I booked an appointment with my primary healthcare provider to which she told me she’s worked with ALS and I don’t have clinical weakness and she 100% sure I don’t have it. She prescribed something for my anxiety and I got into some therapy. Slowly but surely I returned to my normal self and the twitching and jerking went away. Long story short, twitching is not the start of ALS. It wasn’t for me and it’s not for you and my story is an example how health anxiety can send you spiraling and mimic symptoms of a disease we think we have to the extreme. We just have to keep calm and talk through it with our doctors or therapist and keep it from getting the best of us. Hope this helps.

 

[AriaRen]

Two or so years ago I was laying in bed and my left arm started to twitch. Against my better judgment I googled muscle twitching and convinced myself it was the start of ALS which of course shot my anxiety to a 10/10. The following days and weeks more muscles started twitching which of course put anxiety into overdrive. It got so bad that I would wake up in the morning and my arms and hands would jerk immediately. I started to convince myself that I was losing muscle strength because I’d drop things and I felt like I barely had the energy to get though the day. The anxiety gave me such bad stomach pains that I drove myself to the ER, where they did scans and found nothing. I booked an appointment with my primary healthcare provider to which she told me she’s worked with ALS and I don’t have clinical weakness and she 100% sure I don’t have it. She prescribed something for my anxiety and I got into some therapy. Slowly but surely I returned to my normal self and the twitching and jerking went away. Long story short, twitching is not the start of ALS. It wasn’t for me and it’s not for you and my story is an example how health anxiety can send you spiraling and mimic symptoms of a disease we think we have to the extreme. We just have to keep calm and talk through it with our doctors or therapist and keep it from getting the best of us. Hope this helps.

Thank you I just get scared because it's been going on for so long, I've taken citalopram and as much as it helped my anxiety, the twitching didn't go. I guess it's just one of those things I need to ride out and hope for the best. I think a lot of it is down to inactivity, hopefully one day I'll come out the other end of this journey like you have. Thank you again x

 

[Doug97]

The fact that it's been going on for so long, and you still haven't developed any weakness, is a GOOD thing. If it was anything sinister, you'd be dead or in a wheelchair by now. So you can relax - this proves there's nothing seriously wrong with you. You just have Benign Fasciculation Syndrome - and a classic case at that.

My twitching started in my calves, and then as my panic grew it spread everywhere. This too felt like "progression", but that's very different from how ALS progresses.

 

[AriaRen]

My ears, my actual earlobes, have twitched today...how is that even possible, surely anxiety can't do that?? I'm so fed up with this.

 

[bin_tenn]

Twitching isn't always caused by anxiety. That's fine, that doesn't mean it's anything to worry about. I tell people here all the time that anxiety isn't always the culprit, many things are perfectly normal, it's just part of being human.

 

[AriaRen]

Twitching isn't always caused by anxiety. That's fine, that doesn't mean it's anything to worry about. I tell people here all the time that anxiety isn't always the culprit, many things are perfectly normal, it's just part of being human.

Bodywide twitching for over a year affecting more and more parts of my body just doesn't seem like something that can be normal. I'm so so scared.

 

[Iugrad91]

It can be normal if you have anxiety and keep doing the same thing but expect a different outcome. Have you tried therapy, meditation, exercise, meds? There are even self-help sites and apps that have tools to help with catastrophic thinking, etc.

Bodywide twitching for over a year affecting more and more parts of my body just doesn't seem like something that can be normal. I'm so so scared.

 

[ThankfulJen]

I am sorry you are feeling so afraid. You are not alone.

 

[Doug97]

Bodywide twitching for over a year affecting more and more parts of my body just doesn't seem like something that can be normal. I'm so so scared.

But it IS normal! SO many people have it!

My twitching "progressed" from my calves to my whole body as my anxiety about it worsened. As soon as I accepted that it was harmless, it stopped. By continuing to allow it to scare you, you are making it "progress". You've got to stop!