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AriaRen

Please respond, so scared

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I've just started getting a twitch in my leg I can see but can't feel. I'm terrified right now. Isn't this a sure fire sign of ALS? I'm so so scared right now, I've not done anything strenuous today, no reason for this, and I can usually always feel my twitches. It won't stop despite me stretching and walking around. It's just under my calf. I am so scared right now. 

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Breathe. Can you use the muscle? Twitches in ALS come after muscle death. Aria I was in this hole the last 5 months. I’ve stopped giving a flying F about these twitches and now most days I don’t even notice them.... it’s been 5 months, I’d be in bad shape by now. I think you’ve been worried for a while so you would be in bad shape too. We are anxious and have anxious Adrenaline and cortisol racing though our bodies. That extra energy comes out in twitches. Go for a run, do a workout. You are fine. Please let this go. I know hard it is from experience but you have to fight it. Your anxiety is lying to you. You got this!

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2 minutes ago, Mamaisanxious3 said:

Breathe. Can you use the muscle? Twitches in ALS come after muscle death. Aria I was in this hole the last 5 months. I’ve stopped giving a flying F about these twitches and now most days I don’t even notice them.... it’s been 5 months, I’d be in bad shape by now. I think you’ve been worried for a while so you would be in bad shape too. We are anxious and have anxious Adrenaline and cortisol racing though our bodies. That extra energy comes out in twitches. Go for a run, do a workout. You are fine. Please let this go. I know hard it is from experience but you have to fight it. Your anxiety is lying to you. You got this!

Thank you so much ❤️ I can use it, I can still tiptoe and walk on heels etc, I don't know what's going on with me at all. I called my mum and just distracted myself for a bit, so I'm a little calmer now. I'll keep an eye on it over the next few days and take your advice, get out a few extra walks etc, get some yoga in. Thank you, honestly, I just need someone to talk sense into me at times, I'm sorry for clogging up the forum, I just know I won't be judged here. I hope you're well ❤️

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Don’t be sorry. I was literally in your spot until about a month ago. Your okay. You have anxiety. You would not be able to perform basic tasks. That’s how fast this thing happens. Every time your mind goes there you need to replace it wi  try something else . You can do this. And I repeat do Not go to the als forums at all. You don’t belong there and it will make everything ten times worse.

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My daughter once while in college was under a lot of stress during final exams and developed a terrible eye twitch which we could see moving. She felt it too. Once her exams were over, the twitch stopped. 

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My clients brother in law had ALS and his first symptom was slurred speech, so the ER thought he was having a stroke, but it was ALS. He was 71 when diagnosed. 

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Trying to put ALS out my mind, but a well known woman in the UK has just passed away from it at 29, and someone has posted on social media drawing light to it, saying it isn't rare, you have a 1 in 300 chance of developing it. She was beautiful and so brave, and I hope she rests peacefully.

 

I'm trying to take each day as it comes, when my toe twitches, accept it's probably an inflamed nerve from sitting for work so much, making conscious efforts to do my physio stretches etc, and just let time pass. There's nothing I can do, so just work on it, and the more time passes, the less likely it is that anything is seriously wrong with me. I just need to accept this, and give it time. I'd be lying if I said it wasn't still scary at times, as you can all see from my posts, but that's because I'm just starting to try and come out the other side, I need to give myself time. I'll get there. I hope you're all doing well and having a great festive season ❤️

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Don’t believe what you read on social media. Any time you think “I heard, or someone said” take the information with a grain of salt. Meaning most people don’t have the facts about whatever they are talking about. The chances are much lower than 1 in 300. A quick search on a reputable site says 2 in 100,000. Not every site will have exactly the same numbers, but you can absolutely put the numbers you read in the trash. Unfortunately many people on social media are only on there to spread false information and scare people. 

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Yes indeed. So many seem to get their kicks out of putting the frighteners on others. A very big pinch of salt is often needed. Now we need ask ourselves, why ALS? Because it's one of those diseases we hear so much about. What about Mississippi Swamp Fever, or Mongolian Heart Enlargement? (Don't look them up, they don't exist), but you see what I mean? We are not doctors. Leave the diagnosis to the diagnosticians who do know what they are talking about.

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As I have said in a number of previous posts, ALS is an extremely rare disease, with around 5,000 new cases diagnosed per year in the USA. Compare that with cancer and heart disease which have over a million cases per year, and there is really no comparison. 

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Tonight I'm super fed up of the twitching. Not even scared, just fed up. At this point I'm 98% sure it's just either an anxiety or irritated nerve issue, as there's times I don't have one for a while, or atleast don't notice, but then I notice them a lot in bed (where I do most of my anxious thinking, haha), so it's either that, or when I'm lying down or sitting, I'm further irritating the nerve, hence why I notice it. I don't know if that makes sense, haha, it does in my head 😅 I just can't wait until I've worked on myself a little more, to accept it, or until whatever is wrong in my body has healed, so I can move on with my life. I'm just fed up. Sorry to bring you all down x

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2 hours ago, AriaRen said:

Tonight I'm super fed up of the twitching. Not even scared, just fed up. At this point I'm 98% sure it's just either an anxiety or irritated nerve issue, as there's times I don't have one for a while, or atleast don't notice, but then I notice them a lot in bed (where I do most of my anxious thinking, haha), so it's either that, or when I'm lying down or sitting, I'm further irritating the nerve, hence why I notice it. I don't know if that makes sense, haha, it does in my head 😅 I just can't wait until I've worked on myself a little more, to accept it, or until whatever is wrong in my body has healed, so I can move on with my life. I'm just fed up. Sorry to bring you all down x

Hi. Fellow als worrier here. I had twitches in my calves while at rest... It was ALL anxiety. Let me tell you my story real quick. One night I was having horrible wrist pain and weakness. I googled weak wrist and als came up. I almost passed out in my living room. I had to go take a bath to calm down..I read all about als and the symptoms the next night as I lay down for bed I felt twitches in my calves and I had never had them before and I again went into hysterics. My husband made me go to my Dr (to talk about anxiety bec he knew I was fine) my Dr said no it's anxiety but I couldn't let it go. My mind was really screwing with me. After about a year of an als rabbit hole I finally went to therapy and we called bull on all the lies my mind was feeding me. Truth is, als doesn't work that way. You don't get twitches first.. they come after muscle loss and death. They don't happen in more than one muscle at a time and twitches are extremely normal and common..all those sites like to tell you other wise... And that's why we don't google lol. Hugs hun. Let it gooooooo! Say yeah I see you twitch and you mean NOTHING! And slowly but surely it will go away. The more you feed into it the slower it will go. Deep breath. You are okay. 

 

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12 hours ago, Holls said:

Hi. Fellow als worrier here. I had twitches in my calves while at rest... It was ALL anxiety. Let me tell you my story real quick. One night I was having horrible wrist pain and weakness. I googled weak wrist and als came up. I almost passed out in my living room. I had to go take a bath to calm down..I read all about als and the symptoms the next night as I lay down for bed I felt twitches in my calves and I had never had them before and I again went into hysterics. My husband made me go to my Dr (to talk about anxiety bec he knew I was fine) my Dr said no it's anxiety but I couldn't let it go. My mind was really screwing with me. After about a year of an als rabbit hole I finally went to therapy and we called bull on all the lies my mind was feeding me. Truth is, als doesn't work that way. You don't get twitches first.. they come after muscle loss and death. They don't happen in more than one muscle at a time and twitches are extremely normal and common..all those sites like to tell you other wise... And that's why we don't google lol. Hugs hun. Let it gooooooo! Say yeah I see you twitch and you mean NOTHING! And slowly but surely it will go away. The more you feed into it the slower it will go. Deep breath. You are okay. 

 

Hey Holls, thank you so much ❤️ it's mostly my calves it's happening in, the occasional one in my arms etc, but mostly legs. It's been going on for so long now that I know it can't be anything serious, if it was I'd definitely have known 7/8 months deep, there'd be other signs, but you know how it is 😅 our brains are fickle things. I had some therapy to help me previously, and it definitely did, but I think I maybe need to get some more consistently as a kind of maintenance, I made the mistake of thinking I was "fixed" way too soon.

I so appreciate your reply, I'm definitely coming back to read this in future too ❤️ hope you're well x

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Don't let those "twitching" searches rope you into thinking the worst. I had (and still have in my arm) them, and I fell into the same cycle after a dozen random searches suggested it may be ALS.

If you can really focus on something else, even for a minute you will find the twitching stops or at least lessens. Anxiety has been F***ing with me for so long, and I always seems to get the best of me. Don't let it get to you. Hope you are feeling better. 

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There's more to ALS than just random twitches, as there's more to cavum cancer than just bloody snot or more to glioblastoma than a casual headache. Sure, mortal conditions can start with somewhat mild symptoms but they usually come in a bundle of manifestations achieving a clinical 'pathognomic picture' of some sort which will eventually raise a red flag. Twitches alone are non-specific and are of no concerns as a drop of blood on tissue after a nose blow or a light headache after a poor night's sleep are totally non-specific and meaningless. One has to let go of these 'symptoms' which aren't really symptoms but mere physiological manifestations of a live body. Letting go is hard, especially when the mind is inclined to health anxiety. Googling, searching the web or ruminating and constant body checks are the worst you can do, only fueling the cognitive madness. Seizing the moment and focusing on your life is the way out of the rabbit hole. 

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