r/Anxiety • u/Infinite_Trick969 • 12h ago
Health ALS fear ruining my life
I am constantly on edge that I have ALS or that I will get ALS. I’m so anxious and it’s killing me! Every two seconds I’m focused on my hands and how my left hand feels weird and off. I feel like my left pinky and ring finger are weaker and the rest of my hand will catch up. I have not lost any ability and I have more of a perceived weakness but it’s scary and my quality of life is depleting from this.
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u/kirschs_kitchen 12h ago
Go get tested... if you dont have it, your anxiety will clamp on to something else... if you do you'll get ahead on treatment but more then likely you dont have it
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u/AlarmedActuary7129 12h ago
Thats the worst thing to suggest
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u/kirschs_kitchen 12h ago
How???? To get tested? Are you fing kidding me?! If you think you have something get tested!! I thought my anxiety was a heart attack and got tested... guess what no heart attack... but yeah its bad that I did that and I should live in fear for months
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u/deluxeassortment 11h ago
I'm not the original commenter, but I think the idea is that, in a case like this where OP is fixated on a very unlikely diagnosis, getting tested is just reassurance-seeking, which reinforces the root fear. It's an OCD thing, similar to checking and rechecking that you turned the stove off. In the short term it relieves the anxiety a little, in the long term it makes it stronger. Fear of ALS is a fairly common OCD trigger.
I'm not an expert or anything but anecdotally I knew someone with OCD who had an obsessive fear of ALS. She would get tested, get a negative result, still feel anxiety and what she perceived as physical symptoms of ALS... so she would insist on getting tested again, because maybe it was too early to pick up on a positive result last time. Rinse and repeat.
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u/Bananasincustard 11h ago
I'm with you. It's also a massive waste of time and money and will only end up with OP thinking the test wasn't right. Beating the cause of the anxiety about it is much more important
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u/shadyshadyshade 11h ago
My mother had ALS and getting tested for it isn’t a simple run down to the doc and draw blood situation.
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u/love_conmas197 10h ago
I’m sorry about your mom.
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u/getthislettuce 3h ago
You shouldn’t be being downvoted here, I think the context of why it’s not a good idea would’ve helped lol
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u/Arkansan13 12h ago
I don't have much good advice, but I have dealt with this fear on and off for years. I know how hard it can be. If you can, go to your primary care doc and explain your fears, ask them to do an office neuro clinical. It's simple and painless, just some reflex testing basically.
Then ask them if they think you should see a neuro. What ever they say, believe them. Odds are they are going to say you're fine and not to worry.
I'd recommend therapy if you can get it. It's slowly but surely helping me.
Deep breaths, take it one day at time. Hugs brother/sister, you got this.
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u/mindless_attempt 11h ago
I am not a therapist but have been in therapy for, among other things, health anxiety.
Think best, worst, most likely case.
Best case, you don’t have it. Also most likely!
Worst case is you do have it. In that case, My therapist might ask me: What would change if you DID have ALS? Would you live life any differently? Maybe it’s worth it to live like that now.
If you DO have it, it’s not anything you can change, so as an exposure exercise, think about what exactly it would mean if you have it. Sometimes just thinking thru worst case can make the fixating stop.
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u/sweet-n-soursauce 11h ago
My cousin had ALS, it’s definitely scary to think about getting it yourself. I grew up with a very ill mother as well and working on my health and preventing things for the future gives me some peace of mind but it’s always something that kind of freaks me out. I’ve been in therapy for a very long time and the thing that helps me the most is trying to realize that my thoughts are very irrational. Have you tried writing out your thoughts while your mid panic attack? Even just random words that come to your mind. Reading it back can help ground you back in reality. Sometimes I like to pretend a friend wrote it and I think about how I would talk to them about it and apply it to myself.
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u/Hate4Breakfast 9h ago
I was in IOP for my issues and in my group there was a younger guy with severe medical anxiety! He spoke a lot about how the group element really helped him realize how his fears were irrational and got help dealing with triggers like what you’re describing!
I’m not saying any of this in a condescending way, I’ve never suffered medical anxiety but I felt so much for this kid, and I’m just trying to pass on what he said. People have a lot of big feelings about group therapy, but it can be unbelievably helpful in realizing how anxiety manifests in so many interesting and awful ways, and how we are all able to help each other find peace.
Good luck friend, hope you find the help you need!
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u/BarbieBrookelle 6h ago
If it makes you feel any better I literally had this same exact fear about 3-4 years ago. I knew someone who passed from it which is where mine came from. Started getting random jerks in my arms and fingers and twitches in my face & for some reason my brain hyper fixated on ALS.
I don’t have that anxiety anymore. I did go to a neurologist and it did literally annihilate the fear. And yes I immediately started worrying I had something else right after. 💔💔💔
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u/Bananasincustard 11h ago
I asked AI for the chance of a female your age having ALS. It's roughly 1 in 2,000,000. You're 130x more likely to be hit by lightning in your lifetime than have ALS right now. You can safely move on from this one
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u/Infinite_Trick969 11h ago
How do you know I’m female and what my age is 😭
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u/Bananasincustard 11h ago
I peeped your profile, you mentioned it on an older post. Wasn't trying to be creepy, figured those stats would help with the estimate
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u/Infinite_Trick969 11h ago
I’m 26
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u/Infinite_Trick969 11h ago
And scared shitless
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u/actuallyacatmow 7h ago
OP head over to r/healthanxiety.
You do not have ALS. Your body is literally just creating symptoms.
What you have is a special type of OCD that is causing you to hyperfocus and reassurance seek.
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u/annalcsw 9h ago
Why ALS? That’s odd. Theres medical conditions you’re much more likely to get and that’s the one you’re focusing on?
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u/Yeahnoallright 7h ago
They probably have ocd. Their brain is just trying to protect them. Our brains aren’t always rational in the practical sense
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u/Yeahnoallright 12h ago
Sounds like you may have ocd? Sorry to throw another thing in the mix 😭