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Thread: Strong ALS Fear/Anxiety

  1. #1

    Strong ALS Fear/Anxiety

    Hello all. I've been skimming through posts the last couple of days and I got to say thank you for being so open about your fears, and the interaction you all have with each other has helped calm my own fear down quite a lot just by reading. I figured I might add my own story in just to seek some advice.

    Sooo here's my backstory: 2021 has not really been that kind to me. I ended 2020 having put down my dog, so I entered the year super sad and depressed and blamed myself for it for a very long time. Honestly, still do. Very early in January I began getting lower back pain and a weak, sort of tight/sore feeling in my left leg. It wasn't painful or anything and didn't impair anything I did, but I went to go check it out because it was a little annoying. GP sent me over to Orthopedic, who concluded that after sitting on my butt for 24 hours a day during the entire of 2020 probably did something in my back. It made sense, I worked from home most of the pandemic and had also quit the gym for safety and to avoid COVID. So I did some PT, didn't really help, but I still didn't have any fear of MND, wasn't even on my radar. I was sent to a neurologist and he did a clinical which I passed. Brain MRI and lumbar MRI both clean. We then did an EMG on June. I never got my results, but my neuro told me then and there that there was nothing wrong with me, and that I was 100% healthy. So I figured ok I guess I'll learn to live with my annoying back and leg tightness and it'll go away on it's own. Well, on July I had both COVID shots, and after my second one I had one of the worst flus I've ever had, which I heard could be a side effect and eventually went away. However, what didn't go away was this tight feeling in my throat and a constant need to swallow, with a lot of hypersalivation. My left arm is also feeling super weak (the arm that took the shot, coincidentally).

    So here's when my fear kicks in. Frustrated that I wasn't getting any better, I googled what it is I could have, and came across ALS/MND. Literally by coincidence, shortly after learning this I started to experience intense fasciculations, everywhere from top to bottom. Feet to face. By around this time I had also completed a Barium Swallow test that came back completely normal, and ENT exam was good too. I went back to my neuro and explained my fears, about the fasciculations, soreness/tightness, etc. He laughed, but took me seriously enough to do the most throughout clinical exam I've ever had, then laughed again and kicked me out of his office (in a nice way). He said that I do not have ALS, that it was all benign and that it's all just my head. I was very happy to hear that, to be honest. But we're now entering November, and everything is still there. The fasciculations, the back pain, the leg pain (which has now copied itself to my other leg) and the arm pain. I find myself falling in through the ALS forums every day or so and I admit, I get really scared reading some of these stories. However, I'm also open that everything is just benign, or maybe something else entirely. I don't have any objective weakness and my reflexes are fine, so I am open to the idea that it is all in my head. But... it's hard. I started going to the gym again to get my mind off things, as it always helped, but everything is still there. Wearing shirts is a risk, as my bicep sometimes does a quick fasciculation and I just feel super embarrassed when it happens. Been feeling really down every day, not eating and sleeping a lot.

    So the TLDR: I think I may have ALS/MND, but at the same time I think I don't. I need some advice. How did you all fight your health anxiety about this disease? Did any of you experience any similar symptoms are then got ok? How did you get your fear out of this disease? Did you seek a second opinion, maybe another EMG? Is anyone currently dealing with the same fear as I am?

    So I just realized I sort of rambled on after I started. Sorry! Thank you all in advance, appreciate it.

    Dan

  2. #2
    Join Date
    May 2008
    Posts
    1,820

    Re: Strong ALS Fear/Anxiety

    Hi Dan
    lots of people share your fear. Me included. But. You’ve been cleared by a neurologist- and you are posting on an anxiety forum…. So I think deep down you know yourself what is going on here?
    I too suffer from fascics….. but I’ve been told by a neurologist that fasciculations without clinical weakness mean nothing

  3. #3
    Join Date
    Jun 2021
    Posts
    55

    Re: Strong ALS Fear/Anxiety

    Hi Dan, welcome to the world's crummiest club!

    Ways in which your story is like mine:
    1. Sat on Butt for whole pandemic working from a keyboard with zero exercise
    2. Didn't notice or care about fasics at all before reading about MND/ALS (in fact, I'd never even head of them!)
    3. After reading about MND/ALS, fasic'ing everywhere all the time, feel worse.

    Ways that we're different:
    1. I had a dirty EMG in one limb almost 2 months ago, but neuro said several times does NOT think ***, but rather nerve compression
    2. I have a "broad based" herniated disc in low back, seen on MRI, impinging on a nerve root that corresponding to area that fasics the most / hurts / sometimes is slightly numb -- same limb that had dirty EMG
    3. Nearly all my issues are on or correspond to the right side of my body (dominant side / side I lean towards)
    4. I DO have a single, slight, medically diagnosed clinical weakness in the muscles that move my eyes in a very particular direction -- but ophthalmologist thinks I've probably had it my whole life and am simply now decompensating as I age / spend my life behind a screen. I specifically asked her if it could be *** and she said that if it was, they'd write a paper about me.
    5. I have twitching in bizarre places like my middle ear/soft palate which is causing throbbing, clicking tinnitus.

    I hope we both get answers soon. Are you also on the younger side? If so, the chances that all or any of us posting here actually all have *** is probably astronomical. But that barely quiets the HA brain.
    I really do recommend either learning to trust the neuro or finding someone whose opinion will be "final" for you.
    I'm awaiting an appointment with one who does both spine injuries and ALS, exclusively -- and has context on all my prior issues. What she says is final for me.
    If she says it's my sciatica + stress, then so be it. If she thinks could be ***, then so be it. Coming to terms like this has help decrease my emotional distress a bit and (mostly) kept me off the internet.

    Bes of luck to you and let us know how you get on!

  4. #4

    Re: Strong ALS Fear/Anxiety

    Hi Jojo and Kyllikki, thanks for the replies!

    @jojo2316, It's certainly comforting to read about others who too are worried about it. You are right, I haven't experienced any clinical weakness, at least not that I know of. Maybe drop a thing here or there but not consistent enough to make me think it's actually weakness, since it happens to everyone at any point. You too suffer from fascics? That sucks. How often do you get them? I don't think an hour goes by for me without something twitching. They strike when I'm most relaxed, like sitting down or sleeping, but can also hit when I'm active like during a gym session. I get them mostly in my biceps, shoulders, and abdomen, but other places weird places have twitched too like my throat and even my feet. I think what worries me the most is not just the twitching, but combined with everything else that I'm experiencing, like the slight aches in my legs, back and arm, along with a lot of saliva and weird/mucus-y swallowing sensation that make me worry. What gives me great hope is exactly what you said, that I have no weakness and a neuro himself told me he doesn't think I have anything. Can I ask what were your symptoms that made you anxious? How long have you had the fascics?

    @kyllikki, yes I am on the young side! I am 24 right now, so I know the chances are a percent of a percent, but it's like you said it, it barely quiets the mind. I like how you cover the disease as ***, almost like a forbidden disease that shall not be named lol, I think I'll copy it from now on. You are right in learning to trust the neuro. To be honest, I feel like I trust mine but I just keep getting worse. Last I saw him was in July and my symptoms are still here, maybe a little worse. So I'm kind of a limbo where my brain is like, maybe it's ***, but I've been told it's not, but I still feel all these things, so if it's not *** then what? What if maybe he was wrong? Going about my day with all these pains suck a lot, specially my constant throat pain and saliva build up. My tests have come back clean so he suggested it's in the mind, and I want to believe him. I actually have a follow up with them mid November as well, just to see how I am doing. I too will take this opinion as final. Sucks that you had a dirty EMG, but it's good that the explanation is backed up by MRI, so scientifically you have a something that could explain your symptoms. The doctor you are seeing sounds like a good one, being an expert in both spine issues and ***, so that's great. I hope that you get good news on your November visit. I'll report my visit too, hopefully we can both put this fear behind us!

  5. #5
    Join Date
    Jun 2021
    Posts
    55

    Re: Strong ALS Fear/Anxiety

    From the further detail you've given above, I am going to be very straightforward with you: The chance that you have *** as opposed to a buncha muscle imbalances from hitting the gym too hard too fast after a period of inactivity are... well, let's just say I am NOT a betting woman, but I'd stake a gentlemanly sum that your neuro, Jojo, and I are all on the right side of this, and *** is not.

    Please go forth and enjoy your life. You are only 24 once, after all. I'm more than one but less than two decades older, so I feel like I can say this with confidence: you'll do better flexing some mental muscle in therapy, or spiritual muscle in prayer/meditation/focus, than you will do hitting the gym
    (Seriously. The HA is what's really troubling you. Just look at what it's doing to your body!)

    As for me and my dirty EMG, my neuro seemed 100% sure it was due to my disc issue, yes -- and my PT echoed the same. The second opinion is because I am also a certified orthopedic mess. If you are not, I would take a deep breath, maybe say out loud "my neuro knows more than I do," whatever it takes to get this off your mind.
    And then, for real, Dan, go forth and forget about this worry!!!

    Best of luck, please do report back, it helps others on the forum...

  6. #6
    Join Date
    May 2017
    Posts
    102

    Re: Strong ALS Fear/Anxiety

    I am the same with @kyllikki unlike you I also had a dirty EMG back in July showing chronic denervation. I have been told by multiple neurologists that there is nothing to worry about, including an *** specialist who performed his own EMG on me. I do understand the irrational thoughts though. How hard it is to believe what people are saying. Iím nearly 4 months into this and I have good days and bad days for sure. I just hope with you that more time with no furthering of symptoms will calm your mind more. Thatís kinda what I have resorted to doing at the moment. Just wait and see how things go, itís the best I can do and try and trust what the specialists are saying to me. I wish you the best of luck.

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