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Thread: Als MND panic- please help me!

  1. #1
    Join Date
    May 2008
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    Als MND panic- please help me!

    I am in such a terrible place at the moment- I am trying not to cry as I write this as my toddler is next to me on the sofa 😪😪
    I have a long history of sometimes crippling health anxiety, but for the last three years it has been a bit more under control but..... now it is back and I almost can't bare to keep going.
    I am terrified I have ALS and my children are going to have to watch me die a hideous death. It all started when I tripped over a stump on Arun a few months ago. Since the. I have noticed weirded muscle twitching- my eyelids and frequently a muscle in my thumb.
    However because I don't have any muscle weakness I have started thinking I have bulbar onset: I have started to find swalllowing hard, like with dry bread I have to swallow twice to get it down and two days ago I was drinking coffee and it went down the wrong way and I choked. And I am obsessed with the idea that my voice is slurred. My family says it is normal but I keep recording myself saying tongue twisters and listening to them again and again... it's awful. Now I think perhaps my voice is nasal - another symptom! 😱😱😱😱
    And a few times when I breat in through my mouth a little speck of saliva goes down my windpipe and I cough- for some reason this causes me to feel really sure I have ALS.
    I am SO scared. I can't bare this ..... Has anyone had similar fears????

  2. #2
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    Jan 2009
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    Re: Als MND panic- please help me!

    First of all you shouldn't be listing symptoms on here. There are a number of people here who share your conviction that they have ALS and the last thing they need to read about is more symptoms. It is extremely unlikely you have ALS. I bet you have experienced all of those things before. I've choked on a drink numerous times. People do. The only thing that is new is that you went off and read up on ALS symptoms. So now you believe that you are having trouble swallowing and that belief will cause you to have problems swallowing. Swallowing is an automatic process like breathing. Once you try to take control of those processes you are going to experience problems.

  3. #3
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    Re: Als MND panic- please help me!

    Thank you for replying- sorry for listing symptoms and you are right : I did read about them first. BUT they are real (now) and terrifying. I am an experienced sufferer of health anxiety and I actually find it quite cathartic reading about symptoms on here, because- apart from helping me feel not alone - it also reminds me what anxiety can do!! But thank you, just reading your reply is helpful ��

  4. #4
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    Re: Als MND panic- please help me!

    How helpful is it really reading about symptoms on here? After all it's what brought you here stressing about having ALS in the first place. Reading about symptoms. So that makes no sense.

    Regardless, the overwhelming majority of those here with a fear of ALS do not need to learn about symptoms that they haven't even considered yet.

  5. #5
    Join Date
    Aug 2013
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    Re: Als MND panic- please help me!

    The ALS rabbit hole is very deep and narrow. Hopefully you're not too deep in at this point. Please read THIS.

    Positive thoughts
    __________________
    "Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless... Like chasing the wind." King Solomon

    The best help is the help you give yourself! http://cbt4panic.org/

  6. #6
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    Re: Als MND panic- please help me!

    Thank you fishmanpa! You are so right and I am heading fast down that hole. I'm trying to tell myself that what started all this was tripping over on a cross country run, and so for ages I was worried about spinal onset ALS, but when that didn't add up I turned my attention to bulbar onset.... I know it doesn't make sense, and my dr says it's just anxiety but I am just so SCARED!!!!

  7. #7
    Join Date
    Aug 2013
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    24,667

    Re: Als MND panic- please help me!

    Even after reading that information? I mean, according to real ALS sufferers and medical information on the disease, there is NOTHING at all that points in that direction. It's like being afraid a shark is going to bite you and you live 500 miles from the ocean Maybe it's something deeper rooted that you need to explore with professional help.

    Positive thoughts
    __________________
    "Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless... Like chasing the wind." King Solomon

    The best help is the help you give yourself! http://cbt4panic.org/

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

    Re: Als MND panic- please help me!

    Thank you, fishmanpa, thank you : your post is incredibly helpful. I do know that from an outside perspective (like my family and dr) ALS looks unlikely, but health anxiety is incredibly powerful. But that post was just what I was reaching out for when I posted on here. Thank you

  9. #9
    Join Date
    Mar 2011
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    Re: Als MND panic- please help me!

    Quote Originally Posted by jojo2316 View Post
    health anxiety is incredibly powerful.
    As my beloved mom always said "it's the devil".

  10. #10
    Join Date
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    699

    Re: Als MND panic- please help me!

    "Spinal onset ALS"

    Huh?

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