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  1. #11
    Join Date
    Apr 2010

    Re: Fear of having bulbar ALS

    This is just a courtesy reply to let you know that your thread was merged with another of your threads.

    Please when posting on similar topics add it onto your previous post rather than starting a new one.

    It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

    Emmz xx

    nolite te basstardes carborundorum

  2. #12
    Join Date
    Aug 2019

    Re: Fear of having bulbar ALS

    Poor thing. I remember my ALS anxiety and it was brutal! In my opinion that's all this is for you as well. Anxiety.

    Things that stood out to me when I read your post...

    PERCEIVED weakness...the symptoms CAME BACK...STRESSFUL times...FEEL weak.

    ALS doesn't come and go depending on your stress level. You wouldn't feel weak. You would BE weak. True, measurable weakness is what is seen in ALS instead of perceived weakness.

    I was where you are with this or seemingly maybe a tad worse at one point. I was so convinced it sent me into a terrible depression. (I was handwriting a living will to have drawn up that included what my wishes were for not being able to adequately breathe in the final stages and what I hoped they would medicate me with...this is how deep into the ALS anxiety abyss I was). Guess what? I have no weakness now. Not even the perceived weakness. The twitches? I still have one here and there and don't give them a second thought anymore. They think I had a dormant virus that imflammed my muscles they tell me. Negative testing and when I started googling dormant viruses and stopped googling ALS, eventually help me dig up out of that hole.

    ALS anxiety is a dark, dark place. It's very hard to convince someone when they're in the middle of it. I know this all too well but you're going to have to step back and look at this from a distance. Look at all of those key phrases I pointed out. You're answering your own questions about it but your so consumed with fear you're not seeing it. Try to breathe and look at this with a common sense approach. I know this is easy for me to say and I feel hypocritical doing so bc I also get terrible HA. Just wanting to let you know I have been in that scary place and I'm here on the other side of it. You will do the same.

    Sent from my moto e6 (XT2005DL) using Tapatalk

  3. #13
    Join Date
    May 2020

    Re: Fear of having bulbar ALS

    Thank you so so much for your very kind answer, this means a lot

    I see everything you pointed out and notice them on my own as well (I mean it would be very very random for me to have been sure I had ALS, than not anymore at all for a few weeks and then again be sure I have it and really have it this time...) and I also notice that my symptoms vary and come and go, but they're so strong (the cramping I began experiencing in my forearm for example and that I have almost all day long now..) that I can't shake that fear away and am sure something really really bad is happening to me...
    The ironic thing is that I recently underwent surgery for something unrelated (2 weeks ago) and while I was at the hospital I had almost no symptom and was fine... and as soon as I was away from the doctors and nurses there and came back home the symptoms came back as well.. so that might tell something!
    So I have this very rational part of my brain that tells me I probably don't have ALS for all these reasons but then I have the strong symptoms and feeling weak that tell me "no, you have it!" and there is no way of shaking the fear nor be sure, since the neurologist I saw didn't want to give me en EMG and I don't think I can come back to him and ask for it because I doubt he would find clinical weakness now based on the examination he did last time (I could do everything and think I can still do it now...) so my only way out is to convince myself I don't have it, which is really difficult to do!

    Anyway, really glad you got over your own fear and hope I'll do the same hopefully soon!

  4. #14

    Re: Fear of having bulbar ALS

    I know it’s hard when you’re deep in the throws of this but one coping mechanism I use is to write down the ‘symptoms’ you’re ‘feeling’ then re read that in context of the sticky.

    I can relate to the left arm thing - my current relationship with my fear stems from a strange feeling in my arm but it’s just that a ‘feeling’ yours like mine doesn’t describe any motor paralysis symptoms at all; I remember seeing it in this forum once ‘you don’t have good days with ALS - once the function is gone it doesn’t return’ so if you couldn’t raise your arms then you would never ever be able to do it again let alone 15 mins later.

    One push up is impossible, moving the fingers are impossible - pins and needles etc points more to nerve entrapment that’s what the Dr told me then I developed Carpel Tunnel; personally I play PC computer games so the Doc told me to go research how repetitive motion affects the joints - you’d be surprised how much damage you can do especially if you rest on your wrists or elbows on the chair from what wouldn’t be perceived as ‘high stress movement’.

    My friends Dad died of ALS two years ago and he said twitching wasn’t even a symptom he only went to the Dr when he couldn’t pick his keys up or open a drawer - I think for someone not living with it you can’t imagine what it’s like to not be able to move and our minds make up what that could be like and our brains process pain/discomfort/aches into ‘symptoms’.

    On another note repetitive strength test cause your muscles to produce lactic acid the more you do the exercise the worse you will be at it - especially if you are already panicking before you pick the dumbbell up!

    Go look at how doctors grade clinical weakness - can’t move against gravity is stage three if I recall if you can move against any sort of resistance you don’t have clinical weakness.

    This is also the hard one but helped me; you can find neuro exams for bulbar on YouTube - the people being diagnosed literally can’t make mouth sounds properly ie ppp, ggg, eee also they can’t move the soft pallet so if you can move on

    Hope some of it helps - it helps me also do the stats and you will be pleasantly surprised how much more common a long term muscle strain is that requires physio to MND.

  5. #15
    Join Date
    May 2020

    Re: Fear of having bulbar ALS

    Thank you for your answer.
    I know about everything you talk about and I have this rational part of my mind that agrees with you but I also have this part that is convinced I've got it all can't shake that fear...
    I have really strong pain/cramps which is hard to believe could be made up by my brain, it sounds crazy!
    Ans yes I had physical neuro exams, and one recently (3 weeks ago) and everything was fine but I find these exams "too easy", like I feel I could pass them even with a strong weakness and the doctors would tell me I'm fine...
    And I also have these issues with my voice which is kinda raspy and sounds wrong and it's of course freaking me out and confirming (for me) the certainty I have ALS...
    Anyway thanks for responding

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