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Thread: Severe anxiety about ALS—any input is appreciated!

  1. #1

    Severe anxiety about ALS—any input is appreciated!

    Hi all, I’m a new member to this forum and this is a long read — any input/feedback is appreciated!

    I’m young with a history of health anxiety. A lot of weird things have happened to my body yet somehow I’m still standing, but lately I’ve been having troubling symptoms that lead me to suspect ALS. To begin with, I’ll give a history of my symptoms.

    I’ve had a history of muscle twitching for 5 years. Maybe a year and a half or two years after twitching started, one night my right thumb randomly felt stiff/heavy. It still functioned normally, but it “felt off”. Of course, I panicked and suspected ALS, and the “stiff” thumb became a “stiff arm”, with lots of muscle twitching to amp up the anxiety. However after a couple months nothing progressed so I stopped worrying about it. The “off feeling” never really went away, but it was benign and didn’t affect my daily functions. Maybe a year ago, I noticed that I often wasn’t closing my car door hard enough and my posture was poor — my parents pointed it out often. But I was sick of going back down the ALS rabbit hole so I pushed it aside. Around this time I also tested positive for a vitamin D deficiency (and I most likely still have one.) and a high sugar level.

    My real worries started October 16th of this year. I lay my head on my desk to take a nap, and admittedly I did lay in some uncomfortable positions that strained my neck. I took a one-hour nap, and a couple hours later I had a weak/off feeling in my right arm, as if I had just worked out and the muscles felt shaky and heavy. I brushed it off until later that night, when I had a vivid nightmare about having cancer and I woke up with the right side of my body weak, heavy-feeling and shaking. That’s when I started to panic and my once-stifled fears of ALS rose to the surface again. A couple days after symptom onset, I read stories on ALS forums which made my anxiety devastating and crippling. I cried and had panic attacks, and during a bad bout of anxiety my neck felt weak/off and I had trouble keeping my head up. This symptom has since stuck with me but comes and goes. I went to my doctor, who performed strength tests and said I was fine. I still wasn’t reassured. I was dropping things—I still can’t go a day without dropping something, although I noticed that I often drop things when I’m fiddling with them or if my grip is loose and I get distracted. My fingers also felt stiff, and the best way I can describe it is like that feeling you get after you crack your knuckles. I also had/still have mild bursts of pain, mostly in my wrists/hands, too mild to be called cramps, and twitching everywhere but mainly in my hands, arms, and legs which worries me because those are the parts of my body experiencing symptoms. I went to see a local neurologist (who is very qualified) and after performing clinical strength tests concluded I was totally fine and that ALS and MS were completely off the table. She did not order any further testing.

    I still have the same symptoms now. I haven’t noticed any true weakness save for dropping things a lot which is unusual because I’m not a clumsy person. A few days ago my left arm randomly went sore/stiff at the elbow, but went away the next day, and just a couple hours ago I experienced slight difficulty using the fingers on my left hand that won’t go away and even make typing this post a bit more difficult — fingers work fine, they just feel “off”. Grip strength on my left hand is sometimes weaker compared to the right. I’ve noticed more difficulty walking up the stairs/tiring more easily although I’m not sure if I’m just being hyper aware. I’ve had shortness of breath issues too but it goes away when I don’t think about it.

    Update 11/13: I dropped a piece of bread today and I have no idea why it just dropped. I’ve been getting twitches like crazy, first it started in my left hand under my pinky and went nonstop for several minutes but whenever I moved my hand it stopped and came back when I rested it. This afternoon it moved to my left big toe and again when I started walking it stopped. It’s driving me crazy and I’ve been doing better about my anxiety but now I have a horrible feeling it’s ALS.

    Sorry for the long read. I appreciate any input though about what this situation seems like, and I thank everyone in advance for responding!
    Last edited by aliaangel; 12-11-19 at 23:53. Reason: clarification

  2. #2
    Join Date
    Jul 2019

    Re: Severe anxiety about ALS—any input is appreciated!

    How are the symptoms now?

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