Fearful of ALS

[SHIN VUX]

Lately I’ve found myself in a rabbit hole that I‘ve been unable to climb out of for over half a year now, the lingering thought in the back of my head that I could possibly have ALS. I’ve technically known about the disease for decades due to Stephen Hawking, but I hadn’t known that much about it until I looked it up after experiencing what I can only describe as an uncontrollable urge to laugh at things and discovering that it is associated with that condition. Eventually it went away, having likely just been nervous laughter, but the fear of slowly dying from such a horrific disease has haunted me ever since, something that hasn’t really changed despite the reassurance my loved ones have given me and it’s extreme rarity.

Recently I’ve been short of breath and having an uncomfortable globus sensation in my throat, usually after I’ve swallowed something, alongside persistent twitching in my arms and legs. It makes me think that I could be experiencing either the bulbar or respiratory forms of ALS, and it terrifies me. What frustrates me more is that my parents will not allow me to get an EMG that could rule it out due to thinking that it’s all just in my mind.

 

[Phillies Phan]

First off, globus sensation,, twitching and shortness of breath are classic anxiety symptoms. When you scare yourself, you activate the fight or flight hormones which can cause any number of such symptoms. Twitching occurs AFTER the weakness and other very obvious symptoms have occurred.

Since you refer to your parents I assume you’re under 20 or so. Trust me when I say that the incidence at that age is literally 1 in a million.

I strongly suggest that rather than ask for an EMG, you ask for some assistance from a therapist to hopefully nip this health anxiety in the bud. At your young age it’s important that you do so, because HA only gets worse and you really need to save yourself from a future of such anxiety.

 

[SHIN VUX]

I’m 22, but I still live with them and rely on them for many things, like money and driving. I do have a therapist as well and he’s an awesome guy. I‘m just so worried that I somehow have it despite all the odds being against it. If that were the case, I’d be the most unlucky person ever.

 

[Seryn]

We all suffer from health anxiety in here so all understand how you're feeling. The fear of illness is horrible. However have you diagnosed yourself from Google? If this was a credible way to diagnose illnesses don't you think drs would use it? Saves 7years of intense medical training if all you have to do is use Google. Loads of things can cause your symptoms so don't fixate on ALS because it's so scary. Anxiety causes no end of physical symptoms, that's the illness you have not ALS. Good news is as you're already seeing a therapist you're doing the best treatment already!

 

[Phillies Phan]

I’m 22, but I still live with them and rely on them for many things, like money and driving. I do have a therapist as well and he’s an awesome guy. I‘m just so worried that I somehow have it despite all the odds being against it. If that were the case, I’d be the most unlucky person ever.

Look at it in the reverse. Go buy a lottery ticket today for $1. Prize will be at least $1,000,000. Are you going to go home after buying the ticket and then go purchase a fancy house or an awesome car for your parents? Of course not..how ridiculous that would be, because you know you’re not going to win…maybe a free play or even $20 if you’re lucky. A wise doctor once told me I’m not going to win the lottery, and to get an awful disease at your age would be winning the lottery in reverse.

 

[SHIN VUX]

We all suffer from health anxiety in here so all understand how you're feeling. The fear of illness is horrible. However have you diagnosed yourself from Google? If this was a credible way to diagnose illnesses don't you think drs would use it? Saves 7years of intense medical training if all you have to do is use Google. Loads of things can cause your symptoms so don't fixate on ALS because it's so scary. Anxiety causes no end of physical symptoms, that's the illness you have not ALS. Good news is as you're already seeing a therapist you're doing the best treatment already!

I‘m embarrassed to say it, but I did. I think what made my fear even worse lately as well was looking at the ALS forums and seeing a case of a worried person they reassured being later confirmed to have had it after all.

 

[Phillies Phan]

I‘m embarrassed to say it, but I did. I think what made my fear even worse lately as well was looking at the ALS forums and seeing a case of a worried person they reassured being later confirmed to have had it after all.

Dog bites man is not news. Man bites dog is. You’re describing a man bites dog moment.

 

[SHIN VUX]

What do you mean? I’m confused,

 

[Seryn]

If you think up the most unusual or horrible scenarios and Google them you will find someone who has experienced it. That in no way at all means it will happen to you too. Definitely don't look up ALS forums when you don't have a diagnosis there is no need to put yourself through it.

 

[Sweet T]

Odds of someone your age having ALS are 1 in a million. Literally. I looked up.
Please work with your therapist on this obsession. Your efforts should be on staying away from ALS triggers. Good luck

 

[Jonathan123]

What do you mean? I’m confused,

It's like the old journalist's expression, 'good news is not news'. Every day all over the world millions of successful operations are done. Do we hear about them, oh no. But should one go wrong then it's all over the front page. We humans seem to want to see trouble, maybe we are happier with it than without. In anxiety we go looking for problems. It's one of the symptoms of anxiety. The glass is always half empty. Anxiety is always based on fear. No fear no anxiety. So we need ask ourselves what are we actually afraid of?
Having had tests and are told we are physically ok, then why do we not believe them?
Doubt plays such a big part in anxiety. In HA doubt can cause the continuation of symptoms. 'Was the machine working properly? Did they miss something? 'This can't just be anxiety because I feel so bad'. That is why Googling can turn mild anxiety into full blown HA. Suggestion is another of those causes of fear. Google will suggest something is wrong, and as we are wide open to suggestion, we take it all in because in anxiety the worse is always seen as true.

 

[SHIN VUX]

My ALS fear has come back to get me with vengeance after some terrifying things happened to me last night. First, I noticed fasciculations on my tongue in the mirror, which I can’t feel and have read are a beginning sign of bulbar ALS. Then I experienced what I can only describe as dry heaving after I ate a few pieces of pizza and went to bed. When I woke up, pieces of it were mixed with mucus and stuck in my throat so tightly that I couldn’t throw it up or swallow it back down. I‘ve been so depressed today that all I’ve done is slept and showered without actually bathing myself.

 

[Seryn]

Stop checking, poking and prodding or you fear will convince you you're seeing things that are actually completely normal. Don't Google anything!! You cannot diagnose illnesses from Google with no medical training so do even try. I'm not surprised you couldn't eat with all that anxiety and throat sensations also from heightened fear. We've all been there. Just keep an open mind. Have any of these intense illness fears ever come true in the past? No so this one will pass too.

 

[MARCC]

My old boss and friends wife passed away from ALS a few years ago at age 62. Her symptoms progressed pretty quickly and she passed away within 2 years of diagnosis.

 

[SHIN VUX]

I got some really good news. I went to my GP today and he did a close inspection of my tongue. He noticed the movement in it immediately, but said that it far more likely to be shaking from my anxiety as opposed to fasciculations from something like ALS.

 

[Phillies Phan]

I got some really good news. I went to my GP today and he did a close inspection of my tongue. He noticed the movement in it immediately, but said that it far more likely to be shaking from my anxiety as opposed to fasciculations from something like ALS.

Great! Now build on that and turn off the frighteners. Move forward with your life!

 

[SHIN VUX]

After some new experiences this week, a part of me wonders if I really do have ALS. I’ve been having excruciating pain in my lower back, painful cramps in my arms and legs, and stiffness in my hands. My feet also feel heavy when I walk and the muscles in my legs constantly feel contracted. My parents are telling me that it’s more than likely sciatica from the time I spent laying down while I was depressed or a side effect of the new medication I’m taking, but I’m beginning to doubt it due to how widespread and persistent it is.