ALS Support Community

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Fasciculation1
I don’t think I can wait another four months for another EMG.
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Arran
It was a normal emg, It just hurt more than usual, the needle felt thicker
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Arran
I think I’m officially broken mentally now, I don’t know what to do, I feel like my only option is to wait until my hand completely stops working
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Derekb1018
Hey you guys mind if i join the convo? 6 months into bodywide twitching, 21 year old male, clean clinicals but no emgs. Scared of the worst. I dont believe i have weakness but we all know it can start subtly. I twitch in every muscle head to toe. Mostly pops here and there with occasional hotspots tht come and go. What u guys think?
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Arran
Hey Derek, we aren’t really alowed to give advice, as we aren’ diagnosed or official members, I personally wouldn’t rush to get an emg unless your doctor thinks it’s worth it! As we both have perceived weakness and our emgs haven’t help with getting answers, my only un official advice would be, don’t expect an answer In a hurry and there really is heaps of reasons for twitching
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Arran
But your not alone mate, I’m happy to answer any questions you have about what has happened in my case
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Derekb1018
Hey man, just wondering on how ur twitching is? Mine are kinda like single pops, sometimes i get like rumbles that feel like the muscle shakes. Others are just normal twitches. Ive even gotten some inside my ear drum. And do you guys get them all over everyday?
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Arran
Yeah I’ve had them everywhere, and I get what mean by rumbles , but trying to figure out the difference between nasty twitching and harmless twitching is basically impossible
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Derekb1018
Ugh this sucks so bad. How old r u
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Arran
Yeah it does! I’m 35, I wish I could tell you it’s easy to figure out, but unfortunately it’s the complete opposite
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Fasciculation1
Hey gents. Well, Derek, the fact your young, have no atrophy or weakness is a great sign. My twitches started off as quick pops all over. Although, some days, it can still be like that, mine is now more localized in my legs, especially calves. This has been going on 14 months and I get the twitches all over. For the first time last week, I also started getting then inside my ear. They were so bad
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Fasciculation1
a few weeks ago, they woke me up at night. Now I’m taking two prescription sleep meds and melatonin and am finally sleeping well which has resulted in about a 25% reduction in twitches during waking hours.
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Fasciculation1
As Aaran said, the EMGs have been frustrating. Still no answers.
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Derekb1018
Ughhh. Ik my age is a good sign and how i have no weakness or atrophy, but other youngsters get it too so its not impossible
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Derekb1018
But i think you guys should trust the emg (ik its hard) bc u guys have had so many, i wish i have and i have a feeling when i do it wont be good. But ik when if it does come back clean im moving on and never looking back, if i do develop anything then i wanna enjoy my time left but my anxiety rn is whats killing me.
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Arran
I’ll put money on it that your emg will be fine! And your right young people can get it, but at your age! You would have to have had it in your family, and it’s not that I don’t trust the emgs, it’s the disease I don’t trust, because it’s so good at hiding in plain sight, no moderen technology on its own can rule it in or out
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Derekb1018
I dont have it in my family. But idk i feel like its there hiding. I feel like i have atrophy above both knees (symmetrical) and that i find it hard to stand up straight for a while
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AlwaysLivingSca
Hey guys , you all had dirty emgs? I had to clean ones by an als specialist in aLs clinic he said were normal , and I was crazy , left Went to a different Neuro dirty emg , this whole thing is really weird , amazing what a guessing game neurology is
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AlwaysLivingSca
Hey guys , you all had dirty emgs? I had to clean ones by an als specialist in aLs clinic he said were normal , and I was crazy , left Went to a different Neuro dirty emg , this whole thing is really weird , amazing what a guessing game neurology is
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Fasciculation1
My first two EMGs were totally clean. My third only showed chronic denervation in one muscle. My fourth and fifth were pretty much the same, with active denervation in one muscle and chronic denervation in five muscle.
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