Super worried about ALS

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Scaredguy

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Hi- I appreciate everyone’s responses. I have been having a number of symptoms over the past three months. It started off with some vague numbness and tingling in my left hand which has improved. I also at that time noticed some twitching in my right hand hypothenar region. Since that time I have noticed a “dent” in my right upper thigh and most recently noticed some twitching on sides of my mouth especially when making a smile on the right corner of my mouth and lip. In addition, I have noticed some twitching in the middle of my back. I am super worried because I read about als presenting with fasiculations on the internet. I saw a neurologist a few days ago who did an exam and found nothing super alarming but does want to see me back in 6 months. He did not recommend any further testing at this time. No EMG, MRI etc...The fact that he wanted to see me back in 6 months made me super nervous. Appreciate everyone’s thoughts? Thanks.
 

ShiftKicker

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Hello-

Please read here: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms for reassurance.
Things like numbness and tingling are not usually associated with ALS. There are a variety of other signs that indicate concern for ALS and it sounds like you are not experiencing them, nor did the neuro seem to observe any issues.

If a neurologist told you there was nothing alarming and did not wish to test further, it's likely not neurological in nature. There are so many things that cause twitching- not just neurological issues- so it's best you continue working with your doctor to track down the cause. Sometimes people just... twitch- other times it's a mineral deficiency, postural, related to stress or post viral stuff.
 
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lgelb

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Specialists often recommend six-month followup as a matter of course. Don't be worried about that.

Twitching when you smile is often down to stress, lack of refreshing sleep, dehydration or electrolyte imbalances. Simply moisturizing and changing out your lip balm may help as well.

The Internet is rife with ALS alarmism. Don't take it seriously. I see no reason to suspect ALS.

Best,
Laurie
 

Scaredguy

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So it keeps happening when I smile, press on my lips to put chapstick on, or brush my teeth. Quivering of the bottom lip on the right side for about 30 seconds and twitching above upper lip on left side. Anything worrisome?
 

lgelb

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Again, I would look to sleep, stress, hydration and diet. You can keep a diary to determine what works best.

I have never heard of ALS presenting as you describe.
 

Scaredguy

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So I get twitching/shaking on the right side of my mouth and left upper lip area. No weakness but has been going on for a week that I know of. Don’t really feel anything can just see it. Super Worried because I read on here how some als patients have jaw quivering?
 

Nikki J

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What als patients experience as a jaw symptom is not twitching/ shaking. And no we don’t describe symptoms in detail because anxious people read and then get them
 

Scaredguy

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So you don’t think my lip fasiculations which happens when pressing on it and shaking of the corners of my mouth when opening it has anything to do with ALS? Super concerned? I read on this site about someone who has a shaking jaw.
 

Nikki J

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No. I told you. You are not describing what ALS patients experience as jaw symptoms. I know what they meant because I have seen it
 

Scaredguy

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Is my jaw quivering/shaking and fasiculations a sign of jaw clonus? There are members on here who stated there husbands first symptom was jaw clonus.

see quote from another member on forum “
Jaw clonus was an early symptom Chris had, though at the time we didn't know it. All he knew was the trigger was any breeze, even a warm one, hitting him would send his jaw into clonus.

I didn't see it happen for some months, he would say his teeth would chatter.”
 

Nikki J

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Quivering shaking fasciculations are not describing clonus. For the third time. You now of course will decide that you have clonus but you don’t from your initial description. no more posting until after your followup
 
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