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  1. #21
    Join Date
    Mar 2016
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    702

    Re: ALS and why you DON'T have it!

    Quote Originally Posted by Kcguy2017 View Post
    Fishmanpa:

    Would you mind sharing how you came about the facts/knowledge in the original post? It's comforting information for me, but I'd like to know how credible threat info is. Thanks!
    It's taken from the ALS forum. It's credible.

  2. #22
    Join Date
    Mar 2017
    Posts
    213

    Re: ALS and why you DON'T have it!

    what about cramps and spasms? are they too later on, like twitches? or no significance? Lately ive been getting off and on spasms that can hurt.

  3. #23
    Join Date
    Aug 2013
    Posts
    20,790

    Re: ALS and why you DON'T have it!

    Did you read the post?

    Right at the top: ALS is about failing, not feeling.

    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/

  4. #24

    Re: ALS and why you DON'T have it!

    Quote Originally Posted by Josh1234 View Post
    It's taken from the ALS forum. It's credible.
    Thanks for the response. And I'm really not trying to argue or discredit what you wrote. I didn't understand at first that you had literally copied/pasted the words of someone with ALS. It's just that, as you probably know, once you get into this spiral of worrying about symptoms, it takes a lot to turn things around. It seems like people's experiences with ALS can be fairly diverse. And your post seems so black and white. I read one article where a man said looking back, his first symptoms were that he wasn't able to lift as much weight at the gym. It wasn't a total fail. Just gradual diminished strength. I do hear you, though, and although I haven't been to the Dr. yet about my symptoms, I'm fairly certain they won't find any objective weakness. And my twitches started a couple of days after I got concerned about my left hand feeling weak and stiff. Now the twitches are all over my body. I know that's not particularly consistent with ALS either. Unfortunately fear isn't always rational. I do appreciate you taking the time to write the post. I just need to convince myself it really applies to me.

  5. #25
    Join Date
    Mar 2017
    Posts
    213

    Re: ALS and why you DON'T have it!

    that's the part that worries me the most, KC. Diverse. Ive had my symptoms for 8 months off and on, so usually by now it should be obvious. But of course, you read articles that say something like "it took me X long to get a diagnoses" and it makes you panic.

    I guess the important thing to note is, all diseases are diverse. Some people trip and fall, and end up with MS. Some just end up with "I'm clumsy" and no real disease.

  6. #26
    Join Date
    Mar 2016
    Posts
    702

    Re: ALS and why you DON'T have it!

    Quote Originally Posted by Kcguy2017 View Post
    Thanks for the response. And I'm really not trying to argue or discredit what you wrote. I didn't understand at first that you had literally copied/pasted the words of someone with ALS. It's just that, as you probably know, once you get into this spiral of worrying about symptoms, it takes a lot to turn things around. It seems like people's experiences with ALS can be fairly diverse. And your post seems so black and white. I read one article where a man said looking back, his first symptoms were that he wasn't able to lift as much weight at the gym. It wasn't a total fail. Just gradual diminished strength. I do hear you, though, and although I haven't been to the Dr. yet about my symptoms, I'm fairly certain they won't find any objective weakness. And my twitches started a couple of days after I got concerned about my left hand feeling weak and stiff. Now the twitches are all over my body. I know that's not particularly consistent with ALS either. Unfortunately fear isn't always rational. I do appreciate you taking the time to write the post. I just need to convince myself it really applies to me.
    If someone is able to lift 100 pounds at the gym for 20 years then suddenly one day, they can't lift 100 pounds, they can only lift 50, is that not failing? Yes, it is. He failed to do a task his body can easily do for years (lift 100 pounds). In ALS quick paralysis does happen, but also a more gradual loss, but make no mistake, it's not subtle. Losing 40 to 50% of your strength overnight is a big deal.

    When discussing diseases of the body, we go by what the overwhelming consensus says the pathology is. Fixating on an isolated case or two is what hypos do.

    ---------- Post added at 16:22 ---------- Previous post was at 16:18 ----------

    Quote Originally Posted by BazB44 View Post
    that's the part that worries me the most, KC. Diverse. Ive had my symptoms for 8 months off and on, so usually by now it should be obvious. But of course, you read articles that say something like "it took me X long to get a diagnoses" and it makes you panic.

    I guess the important thing to note is, all diseases are diverse. Some people trip and fall, and end up with MS. Some just end up with "I'm clumsy" and no real disease.
    Taking a long time to get diagnosed =/= having zero symptoms in that time frame. It can take months in between appointments to neuromuscular specialists, and when you give someone the death sentence of ALS, you make damn sure you've ruled EVERYTHING else out. That's why the diagnosis process takes so long..

  7. #27

    Re: ALS and why you DON'T have it!

    Ugh. I was stupid and just read a bunch of posts on an ALS forum. I was doing so much better (mentally), and now I'm back to freaking out. Here's the really stupid thing. I can score a 10/10 on this sitting rising test (look it up on Youtube, I can't link it) and I haven't noticed any trouble lifting or squeezing things. Just some problems with my left ring and pinky fingers and perceived weakness and twitches all over. Irrational fear is a bi*^h.

  8. #28
    Join Date
    Feb 2017
    Posts
    160

    Re: ALS and why you DON'T have it!

    I mean, I don't think there are 100% hard and fast rules about ALS, but there are general trends. It's generally a disease of older folks that moves fast. We *know* from the internet that there are plenty of benign nervous twitchers out there. Given this, do you *want* to worry for months that you are the exception to the rules? I mean, my therapist was talking about someone who feared getting hit by a car that veered onto the sidewalk. This person fears walking around. Is there 0% chance this could happen? Of course not (in fact it might be more common than ALS!) Is this person hampering their freedom with this intrusive worry? Of course!
    Sometimes it's easier to see the pattern of thinking when it's not "your" worry. I suggest listing things you have feared in the past to establish your obsessive nature.
    I have the ALS fear and I actually *have* muscle wasting (from a much more benign--though rare--genetic condition). But I'm trying to combat the intrusive fear and remember I have another diagnosis.
    In your case, remember that nervous twitching is very common.

  9. #29
    Join Date
    Aug 2013
    Posts
    20,790

    Re: ALS and why you DON'T have it!

    Quote Originally Posted by Kcguy2017 View Post
    Ugh. I was stupid and just read a bunch of posts on an ALS forum. I was doing so much better (mentally), and now I'm back to freaking out. Here's the really stupid thing. I can score a 10/10 on this sitting rising test (look it up on Youtube, I can't link it) and I haven't noticed any trouble lifting or squeezing things. Just some problems with my left ring and pinky fingers and perceived weakness and twitches all over. Irrational fear is a bi*^h.
    Dude... that has to stop! Don't go reading there. And please, don't join and post.

    There's a positive in that you recognize how irrational you're being. The key is to convince yourself of that fact. You see, there are absolute facts that eliminate the irrationality.

    Let's look at an analogy.... You go to the store, get a fresh cut of beef and some sides, go home and cook it up, sit down to eat and start worrying that the cow they got the beef from maybe had mad cow disease and you might get it from eating the beef (which is impossible).

    So... taking into consideration of all that's known about ALS and the overwhelming majority of case studies compared to your symptoms and the chance is equally impossible. That, and the fact you're posting on an anxiety forum so somewhere under the cloud of anxiety, you know you don't have ALS.

    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/

  10. #30
    Join Date
    Sep 2016
    Posts
    856

    Re: ALS and why you DON'T have it!

    I wonder what the top 10 dieases that those of us with health anxiety fears. Seems like ALS is very high up. Think pancreatic cancer is high on the list aswell. We do fear the worst of the worst.

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