Worried about Bulbar ALS?

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Dec 17, 2021
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Hi there,

I want to start by saying, thank you for having this amazing community of support and information. And sorry for being someone who comes here for this reason.

So I'll try to keep this short as possible, as not to drag on, but I do want to give all the details possible. Info on me: I'm a 28yo male.

This all started in October, and started with weird tingling and random shooting pains on the left side of my body. That lasted a few weeks but finally went away so that could be completely unrelated, but my primary said it was neurological related so I thought I would include it. Anyways, at some point I noticed the fasciculations and muscle twitching on the left side of my body, and in my tongue. The ones in my limbs were not consistent (as it would do it for a few minutes in one spot then go away and start up in a random spot). They show up after workouts a lot, but also on their own. I also noticed I felt some weakness and pain when using my left hand and foot. This part isn't that bad and really did not have me very worried at all.

My tongue is what really worried me. The tongue fasciculations started very subtly and have now progressed and are very bad. It looks like there's little waves moving under the surface of my tongue, while also my tongue quivers shakes and moves constantly. When I rest it the sides twitch in at random and the middle dips at random, and you can subtly see the "waves" or "worms" (I will say the waves/worm looking twitches are no where near as extreme as you see in youtube videos when you google it). It also feels like my left side of my tongue is weaker than the right side, but I don't know if this is just me overthinking. I also feel like the middle of my tongue has a bigger dip in it that it did before, but again not sure if this is overthinking.

I have also noticed that my lips quiver when I open my mouth (smile or just open wide), they quiver and have little twitches. And occasionally the corners of my mouth twitch at rest.

Further, I have not had issues swallowing, but I have noticed in the last 2 weeks that when I go to drink something a small amount sometimes pours back out of my mouth. I am naturally a cluts, spill a lot, accidentally spit a lot (gross sorry), so I don't know if this is normal and if I'm just hyper aware or not. But it's happening often enough that it's noticeable and I'm counting. The weird thing about it is though, is I have full range of motion in my lips, I can do everything normal, purse them hard, they don't feel weaker at all when I move them around.

And then there's my speech. I personally feel that I have subtly started to slur any words with "s" in it, and that it's slowly getting worse. However, no one around me consistently has noticed it at all. No one has said anything to me, and when I ask no one notices it. Again maybe in my head, but when I do it seems like I can *feel* it, as in I feel my tongue not making the full range to pronounce the "s," when I do it in casual conversation. When I try and purposely pronounce it correctly it's fine, but I notice it when I'm just talking not thinking or trying, and I hear/feel the slur. No one else hears it though, so maybe that's just my normal slur or lisp and again, now I'm hyper aware. The slur that (I think) I feel is like the tip of my tongue and left side is weak, and my lips are weak when talking. I have seen any noticeable atrophy, besides that I think there is some in the middle of it, but no one notices.

One thing I know is definitely not being caused by my hyper awareness, is that the tongue twitches are getting worse as the days go on. That you can physically see and I can't deny that. My peers have even seen this as witnesses

So all this being said, I went to a neurologist, and overall he did not seem to concerned about anything. He did want to run an EMG on the left side of my body for peace of mind, and it came back clean everywhere.

With the tongue: he said he would run the EMG on the tongue, however there are many "false positives" as the only way to really put the tongue at rest is to put me under. So he said it wouldn't really draw any conclusions- even if I open my mouth and "rest" my tongue it's not really resting. At the same time, he did see the tongue fasciculations when the tongue was out, and even some when I was resting it, but said that it only matters when the tongue is fully at rest, and that also tongue fasciculations don't automatically mean ALS at all (he even knew of that article that scares people online where the doctor says "if they look like worms under the tongue it's 100% ALS," and said that's not true at all). He said that I would likely have a very distinct and noticeable slur or difficult swallowing with Bulbar Onset. And lastly he said that it would be so extremely rare for me to have bulbar and limb onset at the same time (I was really only concerned about the bulbar and did not think anything of my other issues being related to ALS) that he would be shocked. Ultimately, though I left very comforted.

A few things he said could be the cause of all of this: Post-Covid (er long covid- however my covid case was about 5-6months before this all started and he said it'd be weird that there was a gap between this all starting and me having the virus), I caught another virus in October that's causing this, or I was prescribed Cymbalta and was on it for about 3 weeks and stopped cold turkey because it made my symptoms (and anxiety) a million times worse but he said it could be side-effects.

That was until these tongue twitches still continued to get worse, and I feel like I'm slurring my speech more and more. Everything else is moving towards a getting better direction, but my mouth and tongue are not. And still no one can hear the slur! But I know I have small difficulty with pronouncing "s" in words.

And then I took to the internet (which I have avoided as much as possible), and read stories of people's speech symptoms coming on slowly, despite what the neurologist said. So here I am, a pretty anxious and worried. I'm in another state visiting family for the holidays so I can't make an appointment with him for a while. And the problem I'm having with all the things he said could be causing this: the tongue stuff is getting worse, not better when if it was those things, it should be getting better.

I'm sorry for the length of this, I tried to keep it short as possible but I wanted to include everything. And overall, I thought I was past this scare, but I'm honestly very worried now with progression of this twitching. Thank you again for any responses, and thank you to this great community.
With a clean EMG and a reassuring neuro exam, and others who can see twitches but not hear slurring, I see no reason to worry about ALS. Fatigue, dehydration, electrolytes, stress, and allergies and/or dry mouth can all relate. Cymbalta is an SNRI, and there can be withdrawal symptoms esp. if you stopped cold turkey.

At this point, I would look at what makes you feel better, not "what is my illness," and see how far that takes you.

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Hi Laurie,

Thanks so much for the reply! That is probably a good idea, and I haven't started to try anything. I will say I had all my blood work ran with my primary, including a metabolic panel and electrolytes and everything else was fine. But I do have a lack of sleep, probably don't drink enough water, a lot of stress from life and work, and *very* bad allergies. So I will start to look into being better with my body, and other possible remedies. I wish he would have recommended something that could help with tongue twitching like this.

And the only thing I'm concerned about is, er rather question is, when do I say to decide it's bad enough to go back and run a test on my tongue? No improvement for a certain amount of time? Noticeable atrophy? Distinct slur that others can hear?
If a physician finds clinical atrophy or speech deficits, they will recommend whatever tests are appropriate at that point given your entire presentation, but I really doubt it will come to that.
The time to go back for further testing is when you start having actual failures that your PCP detects and feels warrants further investigation. I agree that nothing you describe sounds worrisome in regards to thinking ALS or anything terminal.
Until then, following up o those general health issues sounds like a brilliant strategy.
I truly wish you the best.
Thanks again for your replies! Sorry for the delay in response, have been busy with work and not online much. I have scheduled a neuro appointment for a few weeks out while I'm home with my family, just get a second opinion- I thought might as well to ease my mind. I normally am not a hypochondriac type, but after the Cymbalta (probably worst decision of my life) it has like altered my anxiety in a way I am in this constant panic that I have something terminal, and I pay attention to everything to if aligns with ALS, or that one brain stem cancer that's indefinitely terminal and quick. I know a lot of this is in my head, but there are some undeniable things, that I hope are harmless, but I need some sort of comfort until my next appointment.

I will say something that calmed the tongue fasciculations was crushing up magnesium and putting it on my tongue. Also more water and more sleep. They have reduced drastically, but still there.

Since the other day I still have noticed I slur S's slightly, but still no one notices. One other thing I noticed, and I thought I'd get your opinions on is I feel as if my top lip has some slight atrophy. I have naturally fat lips, and the top one looks like...stretched? When I smile now. I don't know if it's atrophy or what but the best way I can describe it like a stretched wrinkle at the bottom of my upper lip. Like as if it lost some fullness and there's extra skin.

So I guess my last question(s) here is; would I be able to assess weakness and atrophy, if this was bulbar onset? As in would my lip completely be unable to move or would I notice weakness in my lips (I guess how would you undeniably notice if your lip was weaker)? I can still move it, whistle, kissy face, open wide, but I do get abnormally sore in my lips and cheeks when doing such things briefly. I also get very sore and my face/ gets exhausted from chewing. But is Bulbar similar to limb as in I just physically would not be able to do something, or would it be slow gradual weakness? How can I self assess weakness in the lips/tongue/face before I see this neuro?

Again, those are my last questions- and I appreciate both of your feedback, more than you know. I just have never panicked like this before. I wish I could rewind time and not take that medication for the short time I did. Not that I wouldn't be worried still, but I've never felt this heightened hypochondria before.
Bulbar onset does not manifest with changes in your lips' appearance. If you think there are changes in your ability to chew, one place to check would be with a dentist. Maybe you are grinding your teeth in sleep. But as to self-assessing weakness in the areas you mention, it doesn't manifest as soreness, but as inability to do things, which you do not report. Nor are these the sentinels of bulbar onset.

You are good to go as regards ALS.
Thanks so much Laurie, I wanted to just be sure. I am a clencher, not just in my sleep but all the time (er at least since I started my sales career) to the point it has caused a receding gum line. However, the soreness and chewing difficulty, and sometimes pain, has never ever been as bad as when this all started. Again I'm hyper aware of everything, so I'm adding every piece into it. I'm still going to get a second opinion just to completely write this off in my mind, and hopefully some solutions to help with what is happening.

Thank you so much for your patience and responses.
If you are a clencher/grinder to a big extent, you need a night guard. Obviously, it's a progressive condition, and causes great pain when not treated. You are applying bone to bone.
You are definitely being hyperaware, that comes across quite clearly.
My husband died from bulbar onset ALS. He was like nearly all similar PALS I see here - while he knew he was displaying symptoms, he would ignore them, or downplay them, and other people would bring things up all the time - was he drunk at breakfast time? why was he laughing hysterically when someone said something serious or sad? why was he spraying water everywhere when taking a drink?
Finally I convinced him that we needed to see a doctor.
You, on the other hand, are seeing all kinds of very vague things, no one else is, and you wonder if you can self-diagnose clinical weakness and what is going on.

What is happening, is likely to have far less sinister root causes, and only a doctor can work this out, not you, not even with the help of google.

Please, go talk to your PCP and take a full print out of this thread and ask for direction on what should be done next.

I wish you only the best.
Hi Tillie and Laurie,

Apologies for the delay again, thank you for your replies as they have truly helped put my mind at ease in this waiting period until I run my last 2 tests with neuro. I still have some heavy worry at moments where I somehow find myself on the google or youtube reading things about tongue fasciculations *only* being caused by ALS, and seeing videos that look very similar if not exactly like my tongue; and have to tell myself that that's not true and to not worry. Or when I'm chewing something hard like pretzels and my jaw gets so sore and painful it becomes difficult to want to continue, but I did make a dentist appointment as well so hopefully I get some solutions to that soon.

Your comments have helped very much though, and I appreciate you both for taking the time to respond to me!
Hi Again,

I'm so sorry to be back here, but I've gone a dark hole as things have progressed. I received a clean MRI. My neurologist examined my tongue again and said he was going to refer me to a speech pathologist. He confirmed there were at rest fasciculations (they're like someone has a string under my tongue and is tongue and is tonguing on it in different places every couple of seconds), and my lip trembling when opening my mouth. He still thought nothing of it.

Regardless, my symptoms seemed to have worsened. I feel as if it's difficult to talk, like an effort. My face, jaw, and cheeks get so sore after. With a combo of that and the tongue, I think I'm slurring some words sometimes but no one hears it. It feels as if my left tip of my tongue isn't moving fully when I speak, and my mouth isn't opening fully. I'd say it's more of as if I'm mumbling rather than a slur, and slurring the "s" sounds sometimes. I can force myself to articulate but it's tiring. It's especially bad when I'm already tired. Additionally, these new "fissures" or cracks have shown up on my tongue on only the left side, and whenever I use my tongue to talk to eat or whatever, there is now a burning/tingling/soreness feeling after that lasts a long time. It's extremely uncomfortable and I feel as if my slur and mumble are getting worse.

Any thoughts on any of this would be greatly appreciated as I wait to get an appointment from a different neurologist.
Edit to my above comment (sorry!): I'd like to add the unrelenting fatigue. My eyes/eyebags look like I haven't slept in 60 years (I'm only 27). My friends have commented multiple times "You look tired!" When I have gotten more than adequate rest
There's not much the folk here can really do for you. This subforum provides basic information for those who have a few questions, but once you've been cleared by a neurologist and had an EMG that doesn't show a pattern found in ALS, it's not really a place to keep asking for information.

In order to find out what's going on, you really do need to keep working with your doctors. It sounds like that is happening, so the thing to do is wait. I understand that's extremely difficult, but we are simply powerless here to provide you what you are asking for- which is a diagnosis. It starts to become an exercise in frustration for everyone in situations like this, as it just becomes a back and forth, with the focus being on speculation about a disease that according to both your neuro and emg results you do not have.

I wish we had answers for you, I sincerely do, but we are not a forum that provides answers for medical mysteries, it's a support forum and information resource for those affected by a diagnosis of ALS/MND.
Please see your doctor, as Shiftkicker says, this is not the appropriate place to continue this no matter how much you want to.
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