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  1. #1

    Bulbar onset fear

    This ones really got me.

    Lump in throat. Trouble swallowing. Tongue feels weird in my mouth.

    I just had a normal endoscopy which has actually made my fear of ALS worse.

    I want so badly to beat this without going to a neurologist and admit it's my anxiety but it's so persistent and I can't shake it.

    Anyone been through this? How did you get out?

  2. #2
    Join Date
    Mar 2016
    Posts
    702

    Re: Bulbar onset fear

    Unless you're over 65 and have slurred speech noticeable by others, dont even go there. Just don't. You'd have better chance of being bit by a shark, while being struck by lightning at the same time.

  3. #3

    Re: Bulbar onset fear

    That's good perspective. Unfortunately I'm already there.

  4. #4
    Join Date
    Mar 2016
    Posts
    702

    Re: Bulbar onset fear

    Welp, get outta there!

    ---------- Post added at 02:55 ---------- Previous post was at 02:53 ----------

    You're on an anxiety message board talking about a lump in your throat and trouble swallowing. If you did a quick search with those words, it would yield literally thousands of results. The thought of your fear is also making your tongue feel weird. It's all somatic. How long have you had these symptoms?

  5. #5

    Re: Bulbar onset fear

    Probably about a month or so.

  6. #6
    Join Date
    Mar 2016
    Posts
    702

    Re: Bulbar onset fear

    Bulbar is fast and brutal, and by the time you felt symptoms, you'd start going downhill quick. After a month, you'd have progressive decline in your ability to speak/eat. You are fine.

  7. #7

    Re: Bulbar onset fear

    Thanks. i was doing better with this and then I had the endoscopy on Friday. First they didn't find a hernia; which is what everyone was saying they thought all this was. Then, today, I started feeling like I was gagging all day and can't swallow even saliva without feeling like it's getting stuck and like I have to burp but I can't.

  8. #8
    Join Date
    Mar 2016
    Posts
    702

    Re: Bulbar onset fear

    I mean, that's all classic anxiety stuff. Not to scare anyone, but your chances of having throat cancer are about a thousand times more likely than Bulbar Onset ALS.

  9. #9

    Re: Bulbar onset fear

    You're right. Of course as I am writing with you, my left shoulder starts to twitch. Been doing that for a week now. I know. Anxiety.

  10. #10
    Join Date
    Mar 2016
    Posts
    702

    Re: Bulbar onset fear

    The bottom of my feet have been twitching for a month. Wide spread twitching with no signs of weakness/atrophy/slurred speech/bad reflexes is almost ALWAYS benign. Like astronomical chances of it being something sinister, neuro wise.

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