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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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rottenweather123 | @rottenweather123 | Aug 10 8:07pm
In reply to @deborahfischer "Had fasciculations all over my body, a numb gum and tingling tongue. A DMX xray showed..." + (show)
@deborahfischer

Had fasciculations all over my body, a numb gum and tingling tongue. A DMX xray showed my skull isn't sitting on my cervical spine properly, jaw doesn't open and close properly and most ligaments lax or torn connecting skull to spine. Hopefully you aren't suffering same and the fasciculations will subside over time like mine did after a year. I was tested for ALS through nerve testing when they started-negative.

Through research, I wonder if craniocervical instability is a cause but half the doctors I've seen have never heard of the condition. I'm having difficulty finding a nationwide specialist.

Good luck.

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Hello, in reference to your sentence “A DMX xray showed my skull isn't sitting on my cervical spine properly, jaw doesn't open and close properly and most ligaments lax or torn connecting skull to spine.” Is this Chiari Malformation? My niece has it. She has very bad headaches. Eventually it has to be treated surgically.

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wifeworry | @wifeworry | Aug 11 8:06am
In reply to @avc "My mother was diagnosed with ALS in September 2023 and is now in advanced stages so..." + (show)
@avc

My mother was diagnosed with ALS in September 2023 and is now in advanced stages so I think onset was quite a bit earlier. In myself, I started noticing twitching in my feet (mostly right but a bit on left) and the twitching is now in my calves and a little in my left shoulder blade. Alarmingly, yesterday it started in my tongue. I have experienced twitching over the years but never like this or in my tongue. I am extremely stressed dealing with my parents. I am on only child and live 9 hours away from them by plane. I have been flying to see them once a month and have jet Lahr due to the 6 hour time difference. I am 54. Really hoping this is due to fatigue but should I be worried?

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@avc Chances are with that kind of travel time and the worry related to your mother, that stress and fatigue is a big part of this. But...you might consider asking your mother to have genetic testing done. I believe there is free testing available through some of the drug/research companies. Ask about the Ionis sponsored ALS Panel through Prevention Genetics. My husband is battling ALS currently, and we are determined to compile as much genetic information as possible for our kids and grandkids. Fortunately, we have not found any genetic components for them to worry about, but we do now have a genetic roadmap, that may be useful to them in the future, as more is discovered in the genetics field. Our ALS diagnosis took over 5 years, and if we would have more tangible family medical history, it might not have taken that long. Best of luck to you and your mother.

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