I've convinced myself I had ALS, severe health anxiety

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A few years ago, when people where all doing the ice bucket challenger, I learned about ALS. I had always been paranoid about my health, but this condition looked so terrifying, it jumped right on top of my list of concerns. It even stopped me from being obsessed with pancreatic cancer, at the time I was 20 and nowhere near the age group you usually get it, but one thought stayed with me, one of the founders of the challenge was little over 30. Then, a little over two years ago, I faced some serious personal and professional issues. I moved abroad to a good job, ended up losing it because of the pandemic, lost the house I was in and had to move in with my parents. My relationship with my fiancée was also really strained and I felt stressed 24/7. That December, I felt a muscle twitch on my leg, close to my knee, it was like a little heart beating for a few seconds, and at that moment, a switch turned on inside my brain, that's it I have ALS. I started checking myself obsessively, and having anxiety attack often. Fast-forward another 6 months, by Summer my symptoms had subsided by themselves, I couldn't feel the twitches any more, I didn't even think about them, and I got another great job offer abroad. The stress of starting a new job and moving alone was hard (at the time my fiancée couldn't come because he was battling a tumor, - he's now cured), but all seemed well. Then, in January, I got diagnosed with Covid, a very mild infection. I was completely on the edge for two weeks, and then the symptoms just went away, I thought it was all over, until 4 weeks after I got infected, I woke up feeling as if I had eaten a phone. I could feel a vibration from head to toe, even my eyes where vibrating. It felt as if I was holding a pneumatic hammer, and like in cartoons, I would let it go and keep on vibrating on my own. At that point my old fear of ALS was re-ignited, but not with a embers, this was pure gasoline. I started having anxiety every day, from the moment I woke up, till I went to bed, I was afraid of falling asleep, because that's when I had the tremors, and to make things worse, I started having the twitches again, and I was crying and having panic attacks every other day. I wanted to see a doctor, but the fear of having my suspicions confirmed prevented me from doing it. Finally a few months later, I had trouble breathing, pain between my shoulders and on my left arm, and I had to be taken to the ER, because I thought I having a heart attack. They ran some blood work, and did and ECG, and everything seemed normal. I told them about the twitches and they did some tests on the spot to test my coordination and strength, all looked normal, until the doctor said, "Everything looks normal, but if you keep having these twitches you may have a rare disease". They send me home, I was ashen faced and looked more like a corpse than a person. I started looking at things as being a sign of having ALS, a guy on a gigantic wheelchair on the street, an advertising banner about ALS, a news article about a Japanese lady who went to Switzerland to die because the had it, one day I decided to donate to the ALS foundation, to get good karma. From then on I would think, "If I don't have symptoms for a week, I would donate 7$ to the ALS foundation" , if I can run 1km, I don't have it, "If I see a 'sign' I'll donate money to the foundation to keep the disease away", crazy right? But it helped me cope and keep my mind more at ease...The twitches continued, weaker and less frequent, I went to my family doctor and she dismissed them completely as being neurological, instead she ran more blood tests and found out I had no vitamin D, and that could cause twitches. It was like a life line was thrown at me, I held on to that thought that maybe, just maybe it was just the stupid vitamin D. And sure enough my twitches were reduced my 90%. I was happy, finally!

Then an article about a guy who was on a wheelchair popped up on my news feed. I thought I could read it, so I did. It was an ALS article, and the guy went from having pain on his tight/butt cheek to being in a specialised wheelchair in 1 year. At that exact moment, I felt a sharp pain on my left butt cheek. It was like the switched was flipped again. It's a sort of sciatic pain, that starts on my tail bone and goes down to my left tight, and I knew, this is it, the next stage of my ALS condition. A part of me thought this was just sciatic pain, my posture is horrible, I sit in weird positions, but I started obsessing over this, I started reading more about ALS again, I started checking my speech, my strength, I even bought weights and a thingy to gain muscle in my hands, I would try to hold things between my fingers, my feet, just to see if I still had the same movements, I would wake up checking my body, and fall asleep while checking it. I cannot stay still for long, I'm always moving my leg, or foot, or hand, you name it. My twitches are more intense when I'm having an anxiety attack, and it's like more fuel is being added to the fire.

About a week ago, my fiancée finally convinced me to see a neurologist directly. At the appointment she wrote down my complaints, and then said, " well I have no idea what it could be. Your symptoms, age ground and gender don't really fit in with anything. Let's see some videos of those twitches" I felt more reassured, if she says nothing fits then I can't possibly have ALS, right? She went on youtube and google some random fasciculations videos, as the first one popped up, I looked at the guys' muscles moving and I said, "yeah it's like that, but much less time per muscle, and its everywhere, like a christmas tree" as I said those words, the title of the video popped up, "ALS" the doctor immediately said, "oh no, don't mind that! that's not it", but the damage was done, for me it was the ultimate sign I had it. She told me she was going to ask for some tests just to reassure me I didn't have anything, an electromyography and some blood tests, "you can stop thinking about all those horrible diseases IF these come back normal" but I couldn't hear her, I just knew those tests will confirm my worst fears, and I cried the entire ride home. Now I won't take the exams, I just can't just thinking about them gives me a panic attack, and I don't know how I'll face the world any more...

1 like, 3 replies

3 Replies

  • Posted

    relax please. I have the same thing happened to me starting many years ago. I had the muscle fasciculations and also thought I had a terrible neurological disease. Then I went to a top rated neurologist. He told me that with ALS, you’re not going to have any sensory symptoms which means you are not going to feel sensations such as muscle twitches, numbness, etc. That is not the first sign of that disease. if someone with that disease gets fasciculations it only happens in the late stages of the disease. At that point they are extremely ill. You don’t have that going on.

    he also said that if you Had true ALS, it would be progressive and after a few months you would have other signs and symptoms and be progressively worse. again, that’s not you.

    What you are going through sounds exactly like chronic unmanaged anxiety and stress. Did you know that anxiety and stress can cause muscle fasciculations? I’ve had them for over 30 years on and off. now I basically ignore them when I do get them and they just go away. Whenever I call myself down with relaxation and meditation, my symptoms also calm down. You mentioned that you also did that which means that if you truly had that disease, the symptoms would not ever calm down. However you don’t have symptoms of ALS anyway. Did you also know that professional athletes also get muscle fasciculations with how they use their bodies? It’s extremely common. More than you know. look up something called benign fasciculations. harmless.

    you could get all the testing in the world but my guess is that it would all come back perfectly normal. The more you focus on this the more you will get the fasciculations. What we choose to focus on actually grows larger whether it’s negative or positive. Please stop torturing yourself. And I did that for many years and it was a waste of my life!

    hope this helps you! Take care

    • Posted

      Thank you for your reply, it does make me feel better knowing that I'm not the only one experiencing this, and that it could be just my out of control anxiety. I'm trying to stay busy, and whenever one of my muscles twitches, I just try to ignore it, or I shake it away. I've also booked an appointment with an osteopath, to release built-up tension in my muscles. Thank you for your advice it was really helpful

  • Posted

    i’m glad it was helpful. I just know you’re going to be OK! get some help with the anxiety and you’ll feel a lot better.

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