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Thread: Als MND panic- please help me!

  1. #21
    Join Date
    Jul 2017
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    915

    Re: Als/MND rabbit hole again- bulbar onset? Please help! Xx

    Ha, yes, it's easy for me to see you don't have it too. I'm blind when it comes to applying the same logic to myself

  2. #22

    Re: Als/MND rabbit hole again- bulbar onset? Please help! Xx

    I am REALLY struggling with the ALS fear right now. It’s ruining me. Right now my tricep is thumping and I’m losing my mind.

  3. #23
    Join Date
    Jan 2015
    Posts
    276

    Re: Als/MND rabbit hole again- bulbar onset? Please help! Xx

    So many twitching posts lol. This should show us all that twitching is common. I'm thinking my twitching came from me being in a constant state of panic for 3 years lol. I went from heart to brain eating Ameoba to vibrio to melanoma to lymphoma to colon cancer to brain tumor and then ALS. It started with my tricep twitching seen a neurologist then my right calf. Got an eng all good then the other calf then hand and so forth. Calves twitch all the time now and I'll get the freaky ass thumpers and flutters every now and then. You're gonna be ok just go on with your life and try to ignore them because they are harmless.

  4. #24
    Join Date
    Jul 2017
    Posts
    915

    Re: Als/MND rabbit hole again- bulbar onset? Please help! Xx

    lol, one of the muscles around my shoulder blade has been bubbling and fluttering away all day. It must be the season for it

  5. #25
    Join Date
    May 2008
    Posts
    1,979

    Re: Als/MND rabbit hole again- bulbar onset? Please help! Xx

    Oh! It's both awful and helpful at the same time to see that other people are having the same issues. I am so sorry you are suffering too- but thank you for giving me company in this hole!
    Try to keep in mind what both my and somebody else's neurologist on here said: twitches without weakness are irrelevant.
    But - I know - this is awful isn't it?!

  6. #26
    Join Date
    May 2008
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    1,979

    Back to ALS again. This whirlwind is making my head spin

    I just don't know where to turn at the moment. I am in some sort of state of crisis. This morning I was worrying about a brain tumour and my speech "problems" disappeared because I was focusing on head sensations (which I'm not sure were really even there- but I'm not sure of ANYTHING anymore).
    Then on a run this afternoon I began to wonder if my throats felt funny and then I felt it and wondered if it felt uneven so I looked in the mirror with a torch and I wonder if perhaps my soft palette rises slightly more on one side than the other.

    When I went to a neurologist about my ALS worries in the spring she checked my palette and said it was "perfect". I'm not sure it is any different (I spent a long time studying it for irregularities then too), but perhaps it is slightly slightly lower on the right side. I am driving myself mad again- and making myself gag - poking around and examining myself.
    I just feel so UNSAFE
    Weep
    Jojo xx

  7. #27
    Join Date
    Jul 2017
    Posts
    915

    Re: Back to ALS again. This whirlwind is making my head spin

    I've been through this. I don't need a torch either. It's starkly obvious. My uvula leans to the left, and the right side of my palate hangs lower as a result. it's even more noticeable when I say "ahhhh". I made myself sick with worry over it. But who's to say it hasn't always been like this? I'd never spent so long staring at my throat in a mirror before. My tongue also deviates on protrusion. It is not symmetrical either. You will find these kinds of issues if you look for them. I bet no-one diagnosed with ALS did, though. I bet they were too busy trying to get air when they actually aspirated.

  8. #28
    Join Date
    May 2008
    Posts
    1,979

    Re: Back to ALS again. This whirlwind is making my head spin

    Oh Melfish thank you so much for replying! I am in such a bad way at the moment I don't know which way is up anymore. Of course you are right. Asymmetry is normal of course it is. I am in such a state. I also noticed my head hurts a bit when I cough so maybe I have a brain tumour? Only that wouldn't explain the asymmetric palette..... honestly I don't remember the last time my HA was this bad!
    Happy thanksgiving Melfish! Hope you have a worry free day!

  9. #29
    Join Date
    Jul 2017
    Posts
    915

    Re: Back to ALS again. This whirlwind is making my head spin

    Thanks, jojo, though I forget what a worry-free day is, lol. If you look through my old posts, you will see my uvula obsession became a running joke around here. It wasn't a joke to me though. It was terrifying. I've mostly stopped worrying about it, tbh (though your post did spike my fear a little!). There is actually a study where they found a deviated uvula in about a quarter of the subjects (all healthy).

    ---------- Post added at 10:01 ---------- Previous post was at 09:52 ----------

    I just wanted to add, I understand how you feel, the dread and the panic. It's an awful state to be in. I've been living with this particular fear for six months now, and I have good days and bad with it. Fortunately, the days of sheer terror are becoming fewer and fewer. It's a process x

  10. #30
    Join Date
    May 2008
    Posts
    1,979

    Re: Back to ALS again. This whirlwind is making my head spin

    Dear Mel- I'm so so sorry if I spiked your fear. In the spring when I last worried about ALS I became obsessed with my ulvula too, which goes slightly left. The neurologist didn't comment and I've since noticed from YouTube that most ulvulas are wonky.
    Hope that unspikes your fear. So sorry again
    Xx

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