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Thread: Help - Deep ALS rabbit hole

  1. #1

    Help - Deep ALS rabbit hole

    Hi all, not had a bout of HA for two years but I am deep into an ALS rabbit hole and I cannot get out despite reading the ALS sticky around feeling/failing about 1000 times. I’ve got horrible symptoms, cramping around my body, left calf, right calf, my thighs, my hamstrings, my arm! You name it, im cramping. My dominant right arm feels so weak, like lifting things are an effort and I’m so worried it’s ALS it’s making the symptoms worse. I found many patient stories around people feeling progressively weak which appear to fly in the face of the failing not feeling mantra and honestly don’t know how I’ll make it out the other end of this latest HA attack, it’s been a good 6 weeks now. If anyone can offer some words of rationality please

  2. #2
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    Re: Help - Deep ALS rabbit hole

    Hi

    This is just a courtesy reply to let you know that your post was moved from its original place to a sub-forum that is more relevant to your issue.

    This is nothing personal - it just enables us to keep posts about the same problems in the relevant forums so other members with any experience with the issues can find them more easily.

    Please also read this post:

    http://www.nomorepanic.co.uk/showthread.php?t=213239
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    “Don't be afraid of death; be afraid of an unlived life. You don't have to live forever, you just have to live.” - Natalie Babbitt

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  3. #3

    Re: Help - Deep ALS rabbit hole

    ALS is incredibly rare. You are worried about this because your health anxiety is pointing you to the worst case scenario reason behind your cramping. There are a ton of reasons that muscles cramp that are much more minor (and far more common) than ALS. The one that comes to mind the quickest is an electrolyte imbalance. Lack of magnesium or potassium (or too much) can cause all kinds of weird muscle stuff -cramping, twitching, etc. As for the weakness, ALS weakness is not something that causes you to “feel” like muscles are weak. They are just straight up weak, unable to be used, etc. Not perceived weakness. Trust me on this. I’ve been down the ALS rabbit hole a million times. ALS is probably the cause of my health anxiety because I watched my mother go through this horrible disease as a teenager. Everyone should be concerned about this disease because it is quite frankly the most devastating illness that exists. And still a total medical mystery. But by saying that, I mean awareness and funding research, not worrying about getting it. One of the things that has been very linked as a potential ALS environmental trigger is chronic stress. Actually, many diseases are related to stress. Please do your body and mental health a favor and put the ALS worries out of your mind. The odds are very much in your favor and you don’t want to waste good health worrying about the possibility of someday being in bad health.

  4. #4

    Re: Help - Deep ALS rabbit hole

    Quote Originally Posted by healthnut22 View Post
    ALS is incredibly rare. You are worried about this because your health anxiety is pointing you to the worst case scenario reason behind your cramping. There are a ton of reasons that muscles cramp that are much more minor (and far more common) than ALS. The one that comes to mind the quickest is an electrolyte imbalance. Lack of magnesium or potassium (or too much) can cause all kinds of weird muscle stuff -cramping, twitching, etc. As for the weakness, ALS weakness is not something that causes you to “feel” like muscles are weak. They are just straight up weak, unable to be used, etc. Not perceived weakness. Trust me on this. I’ve been down the ALS rabbit hole a million times. ALS is probably the cause of my health anxiety because I watched my mother go through this horrible disease as a teenager. Everyone should be concerned about this disease because it is quite frankly the most devastating illness that exists. And still a total medical mystery. But by saying that, I mean awareness and funding research, not worrying about getting it. One of the things that has been very linked as a potential ALS environmental trigger is chronic stress. Actually, many diseases are related to stress. Please do your body and mental health a favor and put the ALS worries out of your mind. The odds are very much in your favor and you don’t want to waste good health worrying about the possibility of someday being in bad health.

    Many thanks for your reply. I’m still a bit confused between actual weakness and progressive weakness. Especially given some of the main ALS websites say ALS can appear as a progressive weakness. This does not suggest that a weakness can suddenly just appear, rather something that starts to happen over a period of weeks

  5. #5
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    Re: Help - Deep ALS rabbit hole

    Clinical Weakness—ALS is about failing, not feeling.

    ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.
    It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work


    FMP
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  6. #6
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    Re: Help - Deep ALS rabbit hole

    Quote Originally Posted by Villa07 View Post
    I’ve got horrible symptoms, cramping around my body, left calf, right calf, my thighs, my hamstrings, my arm! You name it, im cramping. My dominant right arm feels so weak, like lifting things are an effort and I’m so worried it’s ALS it’s making the symptoms worse. I found many patient stories around people feeling progressively weak which appear to fly in the face of the failing not feeling mantra and honestly don’t know how I’ll make it out the other end of this latest HA attack, it’s been a good 6 weeks now. If anyone can offer some words of rationality please
    Yeah, this sounds like me and I have the unterrifying (but hugely life affecting) condition known as fibromyalgia. (I thought I had MS)

    But it also sounds similar to me during periods of severe anxiety (pre-fibro) because I tense the crap out of my muscles..

    The most likely causes for muscle issues is anxiety or dehydration. Even a vitamin/mineral deficiency, like magnesium will cause these type of symptoms ( and most people in the UK are deficient)

    When it comes to anxiety, sore muscles are due to constantly tensing muscles or even inactivity. Yes, doing nothing hurts, and to this I can testify. If you're not sleeping well, this can lead to muscle aches and pains too..

    Deal with this HUGELY COMMON symptom. Hydrate. Exercise, especially stretching. OTC painkillers can also help with the discomfort. And most importantly - stop Googling ALS.
    __________________
    A thought is harmless unless we believe it.

  7. #7

    Re: Help - Deep ALS rabbit hole

    My calves (both legs) are now twitching like crazy. Both visible and I can feel it. It’s dreadful. One look on Google and it’s frightening the hell out of me. Along with the leg cramping im totally freaking out here

  8. #8
    Join Date
    Mar 2016
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    4,918

    Re: Help - Deep ALS rabbit hole

    Quote Originally Posted by Villa07 View Post
    My calves (both legs) are now twitching like crazy. Both visible and I can feel it. It’s dreadful. One look on Google and it’s frightening the hell out of me. Along with the leg cramping im totally freaking out here
    Did you read FMP's reply or mine?

    You have TWO rational replies but you're choosing to ignore those and Google an imagined disease instead of dealing with the symptoms which have rational explanations way before you get into ALS territory...

    P.S fight or flight can make your muscles twitch and cramp if they weren't already doing so and all you are achieving in terrifying yourself is to make the situation far worse than it needs to be..
    __________________
    A thought is harmless unless we believe it.

  9. #9
    Join Date
    Jan 2014
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    485

    Re: Help - Deep ALS rabbit hole

    Quote Originally Posted by Villa07 View Post
    My calves (both legs) are now twitching like crazy. Both visible and I can feel it. It’s dreadful. One look on Google and it’s frightening the hell out of me. Along with the leg cramping im totally freaking out here
    I am literally twitching all over for the past 5 months. My right biceps is twitching 24/7. My left eyelid every day but not non stop. My abdomen is twitching calves, quadriceps, shoulders, just not non stop, but something is twitching always.

    As far as I understand twitching is a common symptoms of anxiety. Without actual weakness it doesn't mean much.

  10. #10

    Re: Help - Deep ALS rabbit hole

    Thanks for replies. Still twitching, still in the ALS hole, still googling 8 hours a day, still looking for reassurance. HA is f**cking horrendous.

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