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Thread: Als MND panic- please help me!

  1. #11
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    Re: Als MND panic- please help me!

    Quote Originally Posted by Josh1234 View Post
    "Spinal onset ALS"

    Huh?
    Oh sorry! I've been googling too much! I think ALS either starts in the mouth and throat (bulbar onset) OR the limbs (spinal), not both at the same time (I think). So if people are experiencing symptoms that are jumping all over the place it is suggestive of anxiety (I hope!!!!) x

  2. #12
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    Als/MND rabbit hole again- bulbar onset? Please help! Xx

    Dear Nomorepanic friends -
    I'm here again, and heading back down the als rabbit hole, having dig out of it a few months ago (only to dive straight down a bowel cancer, breast cancer then brain tumour hole, but still....)
    When I first suffered from the ALS fear, which was AWFUL and made me feel so desperate, I went to see a lovely neurologist who was so reassuring and kind I couldn't understand why I had been worried in the first place. I wished I could make all the other als-worriers on here benefit from her reassurance (she said she has people come into her office at least twice a week worrying about twitching and not one of them - in her entire career - has ever turned out to have have MND)

    Anyway - last week I thought I found a sentence hard to say (it was: "thought if you were a reactor you were a reactor") and I suddenly felt this horror and burst of adrenaline inside, thinking perhaps this is bulbar onset. Since then I have been CONSTANTLY monitoring my voice to see if it is slurring and I think I do trip up over words a lot. I keep talking to myself when I am alone and recording my voice and listening back to it. In short I am behaving like a mad person. Which is awful, but I'm so worried I just can't stop. My family says my voice sounds completely normal and are getting very fed up with me asking about it.

    And then this morning I was on the loo and I felt something strange in my bicep and I looked down and it was twitching!!!! Arrrrggggh!!! How can this be happening again. I feel in such a state of panic I don't know what to do.
    I'm reaching out to you lovely people- please talk some sense into me...
    Xxxxx

  3. #13
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    Re: Als/MND rabbit hole again- bulbar onset? Please help! Xx

    Read your own post...

    Quote Originally Posted by jojo2316 View Post
    Hi- about six months ago a muscle on the base of my thumb twitches all day everyday for four whole weeks! I totally panicked about ALS, and of course then started to get other twitches too: so eventually went to neurologist who was brilliantly reassuring.... and then the twitches went! Apparently the thumb is a very common place to twitch
    Positive thoughts
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  4. #14
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    Dec 2016
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    Re: Als/MND rabbit hole again- bulbar onset? Please help! Xx

    Having been through the whole ALS nightmare a year ago, I can emphathize. Remember, "anxiety lies". Your fear is tricking you right now. You do not have ALS, you just have an extreme fear of it and it is taking over your thoughts. I wish there was a magic pill for this, health anxiety really is the hardest thing I have ever encountered in my life. Hang in there.

  5. #15
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    Re: Als/MND rabbit hole again- bulbar onset? Please help! Xx

    Thank you so much Fishmanpa and emmegee. Your words (and mine, fishmanpa!! ��) are EXACTLY what I need to hear. I think one of the awful things about the ALS fear isn't that it encourages hyper attention and OCD checking behaviours which not only make you feel unhinged, but also feed into the whole cycle.
    It's funny - and sad - that recently I looked back on my previous ALS fear almost with fondness because it is was so OBVIOUSLY nonsense (unlike the one I had at that moment - I think it was bowel cancer - which was obviously NOT nonsense. ((only after a colonoscopy it turned out it WAS nonsense after all!! ��))). And yet here I am again believing it all over again. I haven't twitched for months and now I am again (or maybe just noticing it again?) and I am SO conscious of my speech that no wonder it sounds weird (to me, anyway, no one else seems to hear it)
    Thank you guys. I cannot say what a valuable support I find this site!
    Xxxx

  6. #16
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    Dec 2016
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    Re: Als/MND rabbit hole again- bulbar onset? Please help! Xx

    Quote Originally Posted by jojo2316 View Post
    I cannot say what a valuable support I find this site!
    Xxxx
    I agree. I feel so isolated, crazy, like I am the only one that feels like this, like it will never end. Hearing others going through similar struggles reminds me that I am not alone, not crazy, and that I have support.

    My family and friends are very supportive but they really can't truly understand what anxiety and depression feel like if they have never been through it.

  7. #17
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    Re: Als/MND rabbit hole again- bulbar onset? Please help! Xx

    I've had an intense bulbar ALS fear for six months now. It's ruining my life and mind. I am especially obsessed with my speech, and monitor it constantly. I hear myself tripping over words and slurring consonants and running words into one another, but as in your case no-one else has commented.

    That said, I just tried your sentence and it's basically impossible to say clearly or with anything approaching normal speed. It's just an unfortunate and clumsy run of sounds, I think. English is sometimes like that.

  8. #18
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    Re: Als/MND rabbit hole again- bulbar onset? Please help! Xx

    Thank you so much melfish and I'm so sorry you are suffering too. You are right about that phrase I think- no one I've asked can say it properly.... BUT I now think I'm finding other words hard too. I did go through this before and came out of it eventually (onto something else of course, but still!)..... but I wonder if this time it is different, this time the slurring is REAL.
    You say you have had this fear for six months .... do you get any comfort from the fact that you are not deteriorating? Or do you imagine you are? What triggered your fear?
    Hugs
    Jojo xxxx

  9. #19
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    Re: Als/MND rabbit hole again- bulbar onset? Please help! Xx

    One day I noticed my tongue curling at the tip, slowly and rhythmically, by itself! This lead to a massive panic attack and me in the ER. I asked the doctor whether this was the start of a neurological disease and he helpfully replied, "Well, it either is or it isn't". The curling stopped, but then I noticed my tongue quivers when I stick it out. I typed that into google, and you can imagine the rest. Since then I've noticed all sort of bulbar symptoms, but my speech is the thing that really worries me.

    BUT it waxes and wanes, and sometimes I don't notice it at all, which I'm pretty sure wouldn't happen in ALS. I've read that the speech problems are sometimes confused with a stroke, because the onset is so sudden and dramatic.

    I also think paying ridiculously close attention to something that should be more or less subconscious makes us move our tongue and mouth oddly, resulting in strained and imperfect enunciation. At least, that's what I hope it is ...

  10. #20
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    Re: Als/MND rabbit hole again- bulbar onset? Please help! Xx

    My tongue twitches when I stick it out too! I think everyone's does! It's only still (ish) when it's resting in the bottom of my mouth. Get anyone to hold their tongue out and you will see! And you are totally right. If you had ALS no one wld be able to understand you by now. Easy for me to say, harder for you to believe!
    Xx

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