qcd

ALS fears just came back

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I went through a phase about 10 years ago where I swore I was getting ALS. I had muscle twitches all over my body and knew it was just a matter of time.

I've been doing really good keeping my worries at bay for the past year or so but they came back 100% last night.

I woke up very early this morning and my left big toe was twitching. It kept twitching and kept me from falling back asleep. Even now about 6 hours later I can still feel it twitching in my shoe!

I don't know what to do. It just won't go away and I know it isn't in my head!! 

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Hello again, @qcd.  I have had this fear try its best to sneak back into my life as well. You already know this stuff but I will reiterate it anyway.  ALS doesn't show itself this way, you don't have it.  Twitching is all too common and will come and go your entire life in different parts of your body, you don't have it.  Being anxious about twitching is the worst thing to do as it causes more twitching, you STILL don't have it.  Relax, ignore the twitching as much as you can.  In a day or two you will forget about it altogether.  Rest easy and enjoy your weekend.

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Twitching is not a first symptom of  ALS as I’m sure you may know from your previous worries with the disease. Twitching only comes after muscle death and you would have other significant issues if that were the case. Toes and fingers often twitch as they are some of the most used parts of our bodies. It just happens and is normal. 

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18 minutes ago, sTeaLth said:

Hello again, @qcd.  I have had this fear try its best to sneak back into my life as well. You already know this stuff but I will reiterate it anyway.  ALS doesn't show itself this way, you don't have it.  Twitching is all too common and will come and go your entire life in different parts of your body, you don't have it.  Being anxious about twitching is the worst thing to do as it causes more twitching, you STILL don't have it.  Relax, ignore the twitching as much as you can.  In a day or two you will forget about it altogether.  Rest easy and enjoy your weekend.

Thanks! I know it's completely irrational but at the same time it just feels so weird! I can't make it stop and both legs feel kind of tired. Being at working right now isn't helping either...

 

Hopefully it goes away on it's own or I get distracted from it so I don't have to keep worrying.

 

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33 minutes ago, qcd said:

Thanks! I know it's completely irrational but at the same time it just feels so weird! I can't make it stop and both legs feel kind of tired. Being at working right now isn't helping either...

 

Hopefully it goes away on it's own or I get distracted from it so I don't have to keep worrying.

 

I had similar stuff just recently. Shoulder twitch. Tried to freak me out. Arm felt tired. I felt tired. It was tough but I refused to give in. The next day or two it was gone and forgotten. Yours will be the same. Ignore it and realize it is benign twitching that everyone has every day. You just happen to notice it. 🙂

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I know 4 people that have passed from ALS

1 woman and 3 men. 

The woman and 1 of the men had profound weakness in their upper bodies as first symptoms. 1 of the men had a severe back ache. The other man could not speak. 

None started with twitching. 

There's a long list of reasons we twitch that are harmless. 

I have something twitching all of the time, my eye... my bicep...my ribcage.. my thigh... it's weird but I don't even care because it means nothing.

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I want to make sure that those that read this thread in the future understand that the post above mine is a great post and meant to ease fears, however the statement of profound weakness... Well let me make that even more clear... Clinical weakness it the term that should be used... Clinical weakness means you are failing.. unable to hold a cup.. unable to button a shirt.. feeling weak is not the same at all !!!!!! This is hard for people to comprehend with ALS fears.

 

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13 hours ago, qcd said:

I went through a phase about 10 years ago where I swore I was getting ALS. I had muscle twitches all over my body and knew it was just a matter of time.

I've been doing really good keeping my worries at bay for the past year or so but they came back 100% last night.

I woke up very early this morning and my left big toe was twitching. It kept twitching and kept me from falling back asleep. Even now about 6 hours later I can still feel it twitching in my shoe!

I don't know what to do. It just won't go away and I know it isn't in my head!! 

Fellow als worrier. I have worries here and there but I'm so much better than I was a few years ago. Let me be frank, twitches mean Jack shit. 🤪 They really mean nothing. I know how a new twitch or a steady one can cause panic and create fear but just remember you are okay and twitching Is extremely common. Twitches in als is AFTER muscle death and loss. That took me forever to grasp.. but it's true and you certainly don't have that. A man with ALS told me he wished twitches wasn't listed as a symptom he said paralysis should be the only listed symptom.  That spoke volumes to me. Then he promptly told me to get some damn help for my anxiety lol and I did. Please let your fear go. 

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I just posted myself but am looking at threads.  I’m paralyzed by fear that the heavy, weak sensation in both of my arms is from something terrible like als.  I can’t sleep or eat.  I have 18m old twins and my husband is 50 (I’m 40).  Please someone tell me I’m crazy.  Or help me understand what this could be.  I still appear to have full function but more fatigue? I have a neuro consult first June 1 but I don’t know how to make it to then! 

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Anyone with 18m old twins would feel some sort of fatigue. ALS is actually a pretty rare disease and the chances of you having it are extremely remote. 

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