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Thread: MND/ALS can’t stop checking tongue pls help

  1. #1
    Join Date
    May 2013
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    287

    MND/ALS can’t stop checking tongue pls help

    I’ve read the sticky on ALS and I’ve had this fear on and off for years but recently it’s come back with avengence.

    I’m constantly checking my tounge to see if it’s straight and now checking it for twitching/movement on the surface.

    I read that if there is the classic fascilations on my tounge then I’d have other symptoms like slurred speech so it’s pointless keep checking it if something was wrong I’d know without checking my tounge.

    Is this true? Does the twitching start first

    Is bulbar onset rarer?

    Does anymore else do this did you stop?

  2. #2
    Join Date
    Mar 2019
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    75

    Re: MND/ALS can’t stop checking tongue pls help

    Hi lily1,

    Stop checking your tongue. The first symptom of bulbar would be slurred speech. And not occasionally. You would sound like you were holding your tongue as you talk. Everyone would notice. Bulbar does not present with tongue twitching, and yes its quite rare as most cases are distal limb onset. In order to move on from this fear you have to stop checking your tongue for irregularities. Its pointless and only strengthening your anxiety.

    Take care

  3. #3
    Join Date
    Aug 2013
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    24,667

    Re: MND/ALS can’t stop checking tongue pls help

    If you read the sticky, what is your concern?

    Positive thoughts
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  4. #4
    Join Date
    May 2013
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    287

    Re: MND/ALS can’t stop checking tongue pls help

    I think my main concern is anxiety is making me think about my tongue and getting ALS. I focus on my tongue and can’t stop checking it it’s like a compulsion. I wasn’t sure if twitching was the first symptom, before anything else that’s what I keep thinking I’m seeing in the mirror,but the first poster cleared that up and said slurred speech would be there.

  5. #5
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    May 2013
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    287

    Re: MND/ALS can’t stop checking tongue pls help

    Thank you Yourboymj99 I’m going to try real hard to stop but it’s like I think of I don’t I’ll miss something for I guess it’s like trying to reassure myself but as you say it only makes me feel more anxious. You’re right I’d notice slurred speech so checking for twitching and if my tongues straight is pointless

  6. #6
    Join Date
    Aug 2011
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    4,889

    Re: MND/ALS can’t stop checking tongue pls help

    Quote Originally Posted by lily1 View Post
    I think my main concern is anxiety is making me think about my tongue and getting ALS. I focus on my tongue and can’t stop checking it it’s like a compulsion. I wasn’t sure if twitching was the first symptom, before anything else that’s what I keep thinking I’m seeing in the mirror,but the first poster cleared that up and said slurred speech would be there.
    Your anxiety isn't MAKING you do anything. You're focusing, you're checking. That's what you need to stop doing.

  7. #7
    Join Date
    May 2013
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    287

    Re: MND/ALS can’t stop checking tongue pls help

    I probably worded it wrong it’s like an OCD it’s a compulsion to check that I can’t control. I wish I could stop but I find it very hard.

  8. #8
    Join Date
    Sep 2019
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    315

    Re: MND/ALS can’t stop checking tongue pls help

    Maybe seek therapy for your OCD and anxiety
    It must be ALS month.
    __________________
    Strength does not come from physical capacity.It comes from an Indomitable will.

  9. #9
    Join Date
    May 2013
    Posts
    287

    Re: MND/ALS can’t stop checking tongue pls help

    Thank you.

    Yes I have been to two CBT sessions and paid for a private therapist nothing works that’s why I’m so fed up. But will try harder.

  10. #10
    Join Date
    Jun 2019
    Posts
    281

    Re: MND/ALS can’t stop checking tongue pls help

    My neurologist told me you can’t reliably evaluate tongues when they are completely out. They have to rest or else they will absolutely shake and quiver. He checked mine with a light when it was completely at rest.

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