Tongue Fasciculations

Posted by pash86 @pash86, Sep 17, 2022

Hello All,
Apologies if this is the wrong thread, it's all new to me here. But would love to hear from people that may have an idea of what I'm going through.
I first had problems with tongue fasciculations about 2-3 years ago, I was told by doctors it was probably down to stress, after a while they stopped, however for the past 2 weeks they have come back with vengeance, I'm waiting for a neurology appointment but the wait time here to see them is months, I've done the worst thing possible and consulted Dr Google, and every article points to ALS, but I don't know if that's Google doing its usual and striking fear in to me or if actually that's what it is most likely to be. The fact I had it once and it went gives me some ease, but then I've read that there are different types of progression, I mean I am going through a pretty stressful time, but I don't feel stressed within myself. I have read about benign fasciculation syndrome, but the only tongue fasciculation videos I've watched that look like what I have are from people with ALS.
Well, I hope to hear from someone, thanks for reading!
Lee

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@pash86, you're so right. Dr. Google can be really helpful and harmful. Please don't jump to any conclusions until you've consulted with a medical professional. And you've done exactly the right thing and requested an appointment with a neurologist. Good for you.

Now how do you stay calm between now and your appointment? Let's look at the facts.
"People often worry that fasciculations are related to a serious neuromuscular condition like ALS. It’s worth noting that fasciculations aren’t the only symptoms of ALS. In benign fasciculation syndrome, fasciculations are the main symptoms. In ALS, fasciculations are also accompanied by other problems such as worsening weakness, trouble gripping small objects, and difficulty walking, talking, or swallowing."
Here's more information about What Is Benign Fasciculation Syndrome? https://www.healthline.com/health/benign-fasciculation-syndrome#symptoms

You mentioned that you had tongue fasciculations about 2 or 3 years ago and were told by doctors it was probably due to stress. Have you had an increase of stress in your life in recent times?

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@colleenyoung

@pash86, you're so right. Dr. Google can be really helpful and harmful. Please don't jump to any conclusions until you've consulted with a medical professional. And you've done exactly the right thing and requested an appointment with a neurologist. Good for you.

Now how do you stay calm between now and your appointment? Let's look at the facts.
"People often worry that fasciculations are related to a serious neuromuscular condition like ALS. It’s worth noting that fasciculations aren’t the only symptoms of ALS. In benign fasciculation syndrome, fasciculations are the main symptoms. In ALS, fasciculations are also accompanied by other problems such as worsening weakness, trouble gripping small objects, and difficulty walking, talking, or swallowing."
Here's more information about What Is Benign Fasciculation Syndrome? https://www.healthline.com/health/benign-fasciculation-syndrome#symptoms

You mentioned that you had tongue fasciculations about 2 or 3 years ago and were told by doctors it was probably due to stress. Have you had an increase of stress in your life in recent times?

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@colleenyoung Thank you so much for taking the time to reply, and for your link on BFS.
Again I don't know if it is in my imagination after reading up on so many things, but I do see to get out of breath easier recently and my mouth seems to be constantly dry and it is harder to talk as I seem to slur but I think that's because of my tongue, it really aches when i talk.
I feel like such a worry pot!

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@pash86

@colleenyoung Thank you so much for taking the time to reply, and for your link on BFS.
Again I don't know if it is in my imagination after reading up on so many things, but I do see to get out of breath easier recently and my mouth seems to be constantly dry and it is harder to talk as I seem to slur but I think that's because of my tongue, it really aches when i talk.
I feel like such a worry pot!

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Pash, I get it. It's hard not to worry. Do you have an appointment date?

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@colleenyoung

Pash, I get it. It's hard not to worry. Do you have an appointment date?

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Hey Colleen, I have an appointment with my GP on Friday just to see if there is anything I can do to ease the fasciculations as the referral for neuro will likely be months away and I'm struggling to sleep and sometimes talk. And I'll just ask him if the fact I think I'm getting other symptoms is my mind playing tricks on me 🤦

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Have had fasciculations in my tongue and calves mostly. Also trouble with slurred speech and swallowing issues. Had EMG test. Tested normal. I had nasal pharyngeal cancer in 2012 along with radiation & chemotherapy. So not really sure where all this is going. Obviously ALS on my mind but no weakness just issues with swallowing tongue etc. just wondering if anyone had these symptoms after having radiation treatments. Really worried about ALS with these symptoms.

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@rcathey17

Have had fasciculations in my tongue and calves mostly. Also trouble with slurred speech and swallowing issues. Had EMG test. Tested normal. I had nasal pharyngeal cancer in 2012 along with radiation & chemotherapy. So not really sure where all this is going. Obviously ALS on my mind but no weakness just issues with swallowing tongue etc. just wondering if anyone had these symptoms after having radiation treatments. Really worried about ALS with these symptoms.

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Hi @rcathey17, welcome. I moved your message to this existing discussion that @pash86 recently started. Like you, ALS looms as a frightening thought. Are you currently in the process of getting futher testing?

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Have you heard about Burning mouth syndrome

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@colleenyoung

Hi @rcathey17, welcome. I moved your message to this existing discussion that @pash86 recently started. Like you, ALS looms as a frightening thought. Are you currently in the process of getting futher testing?

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Had EMG. Results negative. Had nasal pharyngeal cancer 2012. Have nerve damage from raft to c spine I know for sure. All symptoms with speech young and swallowing started after Covid Jan 2021.

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@rcathey17

Had EMG. Results negative. Had nasal pharyngeal cancer 2012. Have nerve damage from raft to c spine I know for sure. All symptoms with speech young and swallowing started after Covid Jan 2021.

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Have you seen a speech-language pathologist?

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@colleenyoung

Have you seen a speech-language pathologist?

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Not yet but have it scheduled…

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