Twitching After Reading about ALS

SimonaStar

Well-known member
Who of you even began to twitch after reading about ALS?An eyelid twitch in December was the beginning!!On 6April I have read on the web about ALS, and at night I got the twitches everywhere on the body and widespread and random!How can something happen????? best wishes Simone
 
What you described is pretty much exactly what happened to me. Eyelid twitch, then moved all over my body after learning about ALS. This is quite normal for BFS.
 
Me too. I was twitching only in my calf until one day in June, a friend of mine told me a story about how his friend had ALS. I went home, googled it (worst thing I could do) and boom... I did not sleep one minute that night and the twitching started in my back, abdomen, hands, shoulders. Amazing how many people have said that just reading or hearing about ALS triggered their widespread symptoms.
 
The same for me. I even didn't have twitches, only a crampy feeling in my left hand. So I went to Dr google and got to the ALS sites......" thank god I don't have fasciculations.."......few hours later....*popp**popp*popp* exploding calves.....almost nervous breakdown...1day ..*widespread twitch-explosion*
 
Robbyn (mommyLDN) explained this to me last week and I believe it because a therapist I was seeing for anxiety told me something very similar. Every person has their own threshold for anxiety. If a person goes over what their body is built to handle, they can get stuck in this hyperexciteable state where their nerves go into overdrive. This is probably similar to a person who has panic disorder. So if you were twitching in one place (like a calf or eyelid), that was probably the first signal that you were reaching your threshold. Once you started googling and sent your anxiety through the roof, you went over your threshold and are now in this hyperexciteable state. There is not much out there to describe this hyperexciteable state but maybe its an autoimmune response where your body is fighting back and somehow causing interference with your muscles (just a thought). The key is to lessen the anxiety and that starts with believing that you are fine and that these twitches are just benign signals from your body. It may take 6 months to 2 years (or longer) to come out of this state, depending on your ability to control anxiety.When Robynn explained this theory to me last week, it made perfect sense. But keep in mind that everyone is different and we all took different paths to where we are today... but we're all here. For most of us, it was probably anxiety that got us here, but for some people, maybe it was their body's response to a virus that sent them into this state. For others, maybe it was their body's response to a new medication. Who knows. But listen to the vets when they say that getting your anxiety under control will lead to you feeling better. -Matt
 
I'm not sure what you're asking but if you're asking if any of us are still twitching all over our bodies, then yes. I have had nonstop twitching all over for 3.5 months now. -Matt
 
Sorry my English is very bad;)I wanted to say I can not understand it.I can not understand that a person reads about ALS, and then twitches all over body! So how did I, and the others he!!;) :sick:
 
Just a theory. But my guess is that for those of us who started out with localized twitching (like an eyelid, or a calf), it was our body's first signal to us that we are reaching our threshold for stress. So we noticed the twitching and googled it. The fear of what we all read caused so much more anxiety that it pushed us over the edge into this hyperexciteable state. Our body now thinks that our high level of anxiety is "normal". So, we have to retrain our bodies by lessening our anxiety so that it can calm down. From what I gather, this will take time. -Matt
 
hi,Simona_Star this post is crazy ! The same thing happen to me ! I've got a twitch 1 day in my abdomen (this one make me some cramp since more 1 year, but felt that just 8 or 9 times in a particular position, that why I'm particulary scared)), wake up at night opened my lap top to find why my abdomen twitch... and surprise the first disease who appear is Als and suddently I felt twitch in my calf, back, arms,face... allways in my upper right abdominal ! They don't want to go away since 2 months!
 

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