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Thread: Bulbar ALS fear

  1. #1

    Bulbar ALS fear

    So I'm not new here but haven't visited in a couple years. I couldn't remember my old username or info, unfortunately. But this place has brought me much perspective and peace during rough times with HA in the past, hoping for that right now again. In fact, I've had this exact fear before, about 4 years ago and this forum really helped me.

    Ok so my current debilitating fear is bulbar onset ALS. And yes I've made the mistake many times of reading over at the ALS forums, making everything worse of course.

    So my current fear started with incessant phlegm and throat clearing about 5-6 weeks ago. Then a couple weeks after that started I noticed excess saliva (but yet my mouth feels dry at the same time). I now have started biting my inside left cheek (not habitual) when I talk and sometimes when I'm eating. I also feel like my speech is weird but everyone around me says it's normal. I feel like I'm choking on my own saliva, mostly at night when I'm in bed consumed with fear and incessant thoughts. I'm driving my poor husband crazy and I just want to enjoy the time I spend with my kids and husband. I can't get past the fear that this is bulbar onset als. Of course I read on the als forums where a guy said his started just like this, so I can't let go of that. 😕

    I want to never worry about this dreadful, scary disease ever again and I don't know how to get past my fears. It's so hard to believe it's not real when my symptoms are so real.

  2. #2
    Join Date
    Jul 2017
    Posts
    93

    Re: Bulbar ALS fear

    nip it in the bud now, i would go to my dr. i let me fester for months before seeing the dr and am down the rabbit hole now trying to climb out.

  3. #3

    Re: Bulbar ALS fear

    Quote Originally Posted by Becazican View Post
    nip it in the bud now, i would go to my dr. i let me fester for months before seeing the dr and am down the rabbit hole now trying to climb out.
    A few weeks ago I went and said I was concerned about als Bc of my symptoms...he checked neurological related stuff and said I was totally fine, to stop worrying. But the only way to know if it's als is EMG. Neurologists don't just hand out EMGs looking for als unless they really suspect it.

  4. #4
    Join Date
    Aug 2013
    Posts
    20,790

    Re: Bulbar ALS fear

    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/

  5. #5

    Re: Bulbar ALS fear

    Quote Originally Posted by Fishmanpa View Post

    Positive thoughts

    I've read it many times and unfortunately it doesn't stop the overwhelming fear. I hope I can get over this soon and move on with life.

  6. #6
    Join Date
    Dec 2016
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    2,068

    Re: Bulbar ALS fear

    Then check out this thread...
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  7. #7
    Join Date
    Jul 2017
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    93

    Re: Bulbar ALS fear

    Quote Originally Posted by breezie View Post
    A few weeks ago I went and said I was concerned about als Bc of my symptoms...he checked neurological related stuff and said I was totally fine, to stop worrying. But the only way to know if it's als is EMG. Neurologists don't just hand out EMGs looking for als unless they really suspect it.
    If you went to a neurologist and told him/her your symptoms and that it was bothering you to the point of affecting your health . I am sure he will give you and emg.

  8. #8

    Re: Bulbar ALS fear

    Quote Originally Posted by AntsyVee View Post
    Then check out this thread...
    Thank you...that did help to some extent except that my speech isn't my biggest issue. And that I'm almost 38, not 20. 😕

  9. #9
    Join Date
    Dec 2016
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    2,068

    Re: Bulbar ALS fear

    I was hoping it would help you by showing you that so many people on here think they have ALS, and none of them ever do.

    Those are the big fears of HA/OCD...ALS, rabies, schizophrenia... We've seen people lose their livelihoods to fears of these on here, even though the probability of getting them is extremely minuscule. They go through months of testing, exhausting every possibility, not believing tests and double-guessing their doctors, when in reality they should've skipped it all and gone to therapy.
    __________________
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  10. #10
    Join Date
    Jul 2017
    Posts
    915

    Re: Bulbar ALS fear

    Breezie, I'm being eaten alive by bulbar ALS fear too, so I know what you're going through. And I'm 49, and adopted, so I don't even know if there's a family history :(

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