Twitching and internal vibrations?

Cupcake89

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Hi everyone,
I am a 33 year old mom of two.

On May.20.2022 it started with a muscle fasciculation on my face. Right below the corner of my mouth on the left side. I have it on video, it looks like a little snake moving under my skin. It never stops!
After a week my doctor prescribed 4 different medications (2 were muscle relaxers) but nothing helped! Then he told me to get botox to freeze the muscle.. botox didnt work.
After 3 weeks of this non stop, the fasciculation begin to spread.
My left cheek is twitching, my jaw is twitching and my neck is stiff on the left side. It was so bad that i didnt sleep for 3 days and went to the hospital. It felt like i was vibrating infernally on my left side of neck and cheek.

They only did a blood test and everything came back normal.
Now i feel twitching in my arms, abs, hands, calfs, knees, feet and left middle toe. I have never in my life had a twitch before. Not even after working out or having too much caffein.
My left arm is weaker as well.
Im worried sick I have ALS. ( i tried to look for natural ways to stop the twitching on google, none of the common reasons are causing it.. so ALS keeps popping up) This is a very scary disease and the fact that I have add/anxiety doesn’t help either.

Still waiting for neurology to call and the “waiting game” is killing me. I keep waiting to wake up and have these symptoms disappear but they just keep getting worse.

Thank you for any advice
 

affected

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Read this carefully please

my advice - calm down, twitching means nothing, go back to your doctor for help as you are over reacting and need help to calm down.
You will probably do more harm to yourself obsessing over 'stopping the twitching' than is you just start working on calming yourself and doing healthy things.
 

Cupcake89

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Thank you for responding. I know how irritating it must be to have people panicking and constantly asking PALS for advice while they are already dealing with so much. I actually read that post 2 weeks ago and it helped a lot!! but recently the twitching on my face & neck / throat stiffness getting worse has sent me on a downward spiral once again. :(
 

ShiftKicker

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Twitching is very common. For example, if you search for twitching and covid, you will see just how common it is- and not all to do with ALS unless in combination with other very distinctive symptoms. I understand the wait times are long in BC (Hello, neighbour!), but understand that if they had detected something serious, you would have received an urgent appointment.

Once you receive your neuro appt, let the person know you are available for last minute cancellations. With covid rampant in BC right now, there are many cancellations and it sure does make it easier for admin if they have a few people they can call to come in last minute. If you are struggling with anxiety so severe that you are going to Emerg, you may want to address that while you wait to hear from your doctor's office. There is nothing wrong with asking for support and it will definitely help you function and engage with your family and daily activities instead of being so overwhelmed.

Take care
 

affected

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It's not irritating at all, but you must understand that we say over and over - twitching means nothing, and we actually mean it.
I can see you are really anxious, and I appreciate that. However going to lengths such as botox to stop twitching was rather alarming to me, so I suggest you look at other much more healthy and wholistic ways to reduce anxiety which may reduce twitching. These include no internet searching, diet, sleep, exercise and meditation, yoga or similar.
Then your doctor is the person to really work this out with.
We can't really do anything here, and we won't feed you bs or entertain your fears, but will talk reality to you.
 

KimT

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I'm so sorry for your wait to see a neuro. That isn't uncommon these days. Fasciculations can be annoying and they can begin for many reasons. They might be benign, especially if you have no other symptoms. They could be related to many non-ALS things so try not to focus on ALS. Let your neurologist take the lead and figure things out.
 
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Cupcake89

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Hi neighbour!

Yes the wait times in bc are horrible… the Emerge was more because I hadn’t slept in 3 days! I am such a light sleeper and I can’t sleep through the twitching on my face.

Now I have to take a muscle relaxer every second or third day just so I can sleep..

I saw that Covid can cause twitching, but I still haven’t caught covid yet so thats been ruled out for me.

I wish I never looked at Dr.google to help get rid of the twitching🥺 big mistake!
I will definitely let them know I am available for cancelation!

Thank you for your response and advice.

I honestly didn’t want botox but he said i couldn’t rely on muscle relaxers to sleep. I agreed because I hate taking medications but desperately needed to sleep. He said it would freeze the muscle and stop twitching. Unfortunately it did nothing at all.. then the twitching spread all over😳

When i showed my family doctor videos of the random body wide twitching, he was very concerned which of course sent me into a panic.

I will try yoga and meditation to help with my anxiety over this. I keep reading the “read before you post” to help calm my nerves as well. Thank you for the advice
 

Cupcake89

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I’m so confused. I have read the “read before posting” sticky multiple times. Many PALS/CALS have commented on posts in the “is this ALS?” forum all saying that fasciculations alone mean nothing.. but I have now read multiple PALS past posts on here saying one of the first things they noticed was the fasciculations or cramping! A fellow parent in my complex told me her 31 year old cousin who died from ALS said he had only twitching for 6 months in his leg before ANY weakness.

Are fasciculations, without any weakness an early symptom of ALS or not?
I’m waiting for my neuro appt and being told that twitching alone is not a sign of ALS helped calm me down a lot, but now I keep reading the opposite and its sending me into another panic. :(
 
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affected

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Headaches are experienced by people with brain cancer.
Does that mean that if you only ever have headaches you have brain cancer?

Every PALS that noticed twitching first, then progressed to failures that led to clinical exams and diagnosis.

No PALS has ever died from twitching.

Please, let it go and return to your doctor. We have made this all clear in the sticky post. All the best.
 

Cupcake89

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So I finally got my Neurologist appt on Friday…

The Neurologist was not able to see any fasciculations.. they do not happen all the time, they last about 5-10 seconds then disappear.. I had 3 videos saved in my phone that I showed him. My two hot spots (middle toe on left foot & bellow my lower lip on the left side happen multiple times per day everyday) plus a video of the palm of my hand bellow my thumb (right side)

He did a ton of strength tests on me, and I easily passed all of them.

He did reflex tests and I think I passed all of them (he didn’t say I did but they all looked normal and he kept saying “good”)

He had me hopping on each foot, i can walk on tip toes and heals, my hands have lost zero strength, I have zero visible muscle atrophy.. my ONLY symptom is body wide fasciculations and a feeling if internal vibrations under my chin and left side of my neck.

Twitching started below the left side of my bottom lip May.20.2022 for 3ish weeks, then spread all over. (Lip, eyebrow, cheek, neck, chest, forearm, hand, tummy, back of thighs, calfs, under left foot and middle toe on left foot)

I felt pretty confident after all those tests.. my CK levels are 94 (which is below the 140 mark)

My husband is convinced i pinched a nerve or something slipped in my spine..

But when the neurologist sat down with me after, he said one of two things. ALS or BFS!

I was in complete shock! He said he is leaning towards BFS because I have no weakness or atrophy but he said it was “still early” since this all started 2 months ago… he said he is skipping all other tests (MRI, X-ray for spine) and sending me straight for an EMG within 3-8 weeks to help rule out ALS.

Please help me understand, why are these the only two options he is seeing? He told me to relax and not think about it too much but how can I not? I thought fasciculations can be caused by so many different things. I left there feeling even more scared then when I went in. 😭
 
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KevinM

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Without additional tests, that seems to be a wildly inappropriate comment.
 

Cupcake89

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My husband thought so too.

My anxiety is through the roof now. I’m so upset and surprised he even mentioned ALS because my strength and reflexes were great. All the simple things have been ruled out - too much caffeine, not enough magnesium, exercise, not enough sleep etc.

He said these fasciculations could either be benign (BFS) or serious (ALS) and he would rush an EMG. Id be called within 3-8 weeks to have it done (and he will be the one doing it) and just take magnesium every night to see if it helps me sleep.

I even told him when I move my neck a certain way it triggers my lip twitch (this is why my husband thinks its a spine/pinched nerve)
 

KimT

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I'm also very surprised at the comment from the neurologist. It just sounds ignorant and unprofessional.
 

Bestfriends14

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I'm shocked that a medical professional, in these days of litigiousness, that he would give you only two options as the only diagnoses related to twitching. He has not even conducted any of the proper tests to say such things. Wow, just wow.
 

ShiftKicker

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Cupcake- you can contact your gp and ask if they have received the neurologist's report. You can review it- it may contain more information than you may have gleaned from the neuro's comments at your appointment. I, too, am amazed at the neuro's comments.
 
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