ALS?

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Faith2021

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Hi,

I'm quite worried as I am now 5 months into my muscle twitching. Any advice or reassurance would help.

Symptoms:
- 5 months ago on August 1st, 2021 I had muscle twitching in my right eyelid and right quad in my leg.
- Within days, I started to have twitching all over my body
- After a few weeks my fingers and toes started to "wiggle" on their own
- On week 5, I went to a prestigious hospital's neurology department and had an EMG - normal result. - The Neurologist said - Come back later if it's still a problem but I think it will go away on it's own.
- I continued to have muscle twitching all day every day - arms, stomach, back, legs, and continue to have the "wiggling toes" - where they move on their own.
- I just had another EMG at 4.5 months post first symptom and it also has come back with a normal result. (Same hospital as before - top tier medical institution)
- Through this entire process I have dropped about 12 pounds (186 down to 174) - though this could be because I am stressed about results.

My neurologist agreed that the EMG was normal but that she would forward on a recommendation for me to meet with a neuromuscular specialist. The Dr performing the EMG said "This is not ALS as you have a normal EMG at 1 and 4.5 months post twitching".

Do I have ALS? I have muscle fasciculations, my toes and fingers wiggle on their own accord, but I have had 2 normal EMGs at 1 and 4.5 months post symptoms. Any advice or insight would be greatly appreciated.
 

Bestfriends14

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What can we tell you that you'll believe as you won't believe top-tiered neurologists? Twitches mean nothing unless they are accompanied by muscle function failure. What is it that you can no longer do that you could before? Do you walk like you used to? Can you use your hands like you used to? Not sure why twitching alone, two clean EMGs, and multiple clean clinical exams would cause you to worry about ALS. Nothing you posted remotely says ALS, which is why I ask.
 

ShiftKicker

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Here's the previous thread for prior discussion:
 

lgelb

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Two normal EMGs in the timeframe you've had them argue against ALS as a reason for your twitches and fascics. I encourage you to read up on benign fasciculation syndrome (BFS) and see if it might apply.

As we previously discussed, even mild imbalances in calcium/phosphorus/magnesium/vitamin D ratios can affect these kinds of phenomena, so it may be worth experimenting with your diet, hydration, and even exercise regimens. Needless to say, sleep and stress can also play a role, and the weight loss, if you weren't trying for it, supports that as a place to look.

Best,
Laurie
 

affected

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Honestly, why would you ask this of the terminally ill - twitching means nothing and you've been told by experts who actually examined you. I don't mean to be rude, but I think you are just looking to cause a fuss to relieve your anxiety. No more, please don't continue this it is not healthy for you at all.
 

Faith2021

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I'm really sorry - I didn't mean to upset anyone. I'm very nervous regarding the twitching and I understand this might not be the correct place to post this.

For the last 3 weeks the twitching has predominantly been in my left foot and so it does worry me - I have tried to discuss this with my doctors but they are just having me do a third EMG in a few months as the first two were normal at 1 and 4.5 months post initial twitching...

I just was hoping that if anyone had any reassurance I could seek it but also understand and didn't mean to frustrate anyone.
 

Nikki J

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So many people twitch. Having the normal emgs and normal exams that you have reported you really should try to stay away from places like this for your own good. Try the subreddit muscle twitch. You will find similar stories to yours and support from people in the same place you are. Talking to people who have been twitching for much longer and are still fine will likely improve your outlook. Good luck
 

affected

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I understand you didn't mean to upset anyone, yet you come back and ask again?
Please do what Nikki suggests, also talk to your doctor about your fear.
We can't help, but you didn't upset me. ... unless you continue to push here.
 
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