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  1. #1
    Join Date
    Jul 2017
    Posts
    915

    bulbar AND limb onset?

    Is this even possible? It's one or the other, right?

  2. #2
    Join Date
    Dec 2016
    Posts
    2,068

    Re: bulbar AND limb onset?

    Why even go down this road? You know you don't have ALS.
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  3. #3
    Join Date
    Jul 2017
    Posts
    915

    Re: bulbar AND limb onset?

    Because I don't know that, in all seriousness. I know it must be annoying for others to read, but I'm still sick with worry. And my bloody left thumb has started twitching :/

    ---------- Post added at 15:08 ---------- Previous post was at 15:07 ----------

    I mean, I know I have bad health anxiety also, but the two aren't mutually exclusive

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

    Re: bulbar AND limb onset?

    Please read this...

    Positive thoughts
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    "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
    Join Date
    Jan 2015
    Posts
    276

    Re: bulbar AND limb onset?

    No it doesn't happen like that in ALS, but it does in BFS. I twitch everyday today my eye bottom lip hand and calves have been twitching. Try to relax and schedule an appointment with a neurologist so he or she can look at you like you're crazy and tell you that you don't have ALS lol. If a clinical Neuro exam and an EMG can give you peace then do it.

  6. #6

    Re: bulbar AND limb onset?

    Melfish, as someone who had the same fear for almost 3 years (every single day) all I can say is please turn around and stop worrying about it.

    AntsyVee said it, don't go down that road..
    In 3 years I thought I had all the symptoms, speaking, swallowing,weakness....
    And after all those years worrying about nothing one day I got carpal tunnel syndrome and experienced actual clinical weakness, if you didn't know already this is real weakness, the one doctors look for.
    The doctor just put his finger on top of my thumb and it just went down even though I tried my best not to let him push it down.

    Then something just flipped in my head and I was like "HAH so that's the kind of weakness everybody is talking about".

    What I want to say is ALS is about failing not feeling or perceiving.

    I'm free of this worry for more than a year now, the thing is I shouldn't even have worried about it in the first place.

  7. #7
    Join Date
    Jul 2017
    Posts
    915

    Re: bulbar AND limb onset?

    Ha, I already know I'm crazy

    ---------- Post added at 15:35 ---------- Previous post was at 15:31 ----------

    Thanks again, Zomboy. I was deadlifting 100 pounds yesterday (I weigh 120), so my grip can't be all that weak. I have had a lot of pain in the thumb joint for some time, and have difficulty squeezing with the hand because of it, but it's not weakness per se. I stop what I'm doing because of pain, not muscle failure.

  8. #8
    Join Date
    Feb 2017
    Posts
    90

    Re: bulbar AND limb onset?

    I know a lot of people have said this but I cannot stress enough that you do not want to get caught in the blackhole of worrying about ALS.

    Ive been at it almost a year and it is hell. If you have been to a doctor, even a GP and they said that you don't have ALS, then you don't have it. It is not a disease that a doctor would easily miss.

    I twitch literally everywhere. hands, feet, legs, arms, neck, eye. I am just starting to accept them and not fear them as much. Twitches are anxiety, muscle fatigue, or a totally normal part of being alive. I know this can be hard to accept.

    If you can walk, talk and hold a cup of coffee the odds of you having ALS are as close to zero as it can be.


    Please let this fear go before it takes over your life.

  9. #9
    Join Date
    Jul 2017
    Posts
    915

    Re: bulbar AND limb onset?

    Thanks, Scotttt. The fear really is all-consuming, and it's exhausting. I've got a lot of other stuff going on in my life right now, which has been put on the backburner due to my overwhelming ALS fears, and at times I can't help but wonder if it's my mind way of channelling the anxiety into one place. If that even makes sense ...

  10. #10
    Join Date
    Feb 2017
    Posts
    90

    Re: bulbar AND limb onset?

    This past week I have been very stressed with work and I have been twitching more AND worrying about them more. Stress and anxiety will find a way out, for us its my focusing on irrational health fears.

    Have you tried meditation or maybe even seeing a therapist? both have helped me in the past. There are also some great help on the Top Tops section of this site.

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