tongue twitches, think tongue, scared of bulbar ALS

Scaredwife

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Hello everyone,

I feel almost ashamed to post here, but my husband has recently been suffering from tongue twitches. He describes it as so: after intensive talking with clients at work, his tongue starts to feel 'thick' which makes him think he doesn't articulate properly. I did not notice anything out of the ordinary while talking to him, expect for him saying he can't talk properly because of this 'thick' feeling. Sometimes i feel like he has a lisp and his tongue seems to be more upfront (against his front teeth)

We also noticed some twitches in his tongue, but really hard to tell if they are actually twitches of just contractions. He also had a tremor on hit left side for 1 or 2 days. Meaning: if he put pressure on his left hand or the left side of his face, he would tremor. There is a difference in strength between left and right, but isn't that normal?

The feeling of a 'thick' tongue only seems to occure after intense talking or after having conversation with someone for a longer period of time (like 30 mins). He did have some pains on his chest a few months ago, those pains come and go. He is also experiencing some dizziness.

I know i might be a bit of a hypochondriac, but im literally so scared about him having ALS i have not been able to eat the past few days.

We did see a neurologist who told us she did nog see anything out of the ordinary. We made videos of his tongue twitches, she did not know if they were fasculations or not. She did not notice the strength difference between left and right.

Please excuse my English, since i'm from the Netherlands. Thank you so much for your time and making effort to read all of this.

Does this sound like ALS symptoms to you?
 

lgelb

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No, they do not.

Yes, a difference in strength in the two sides is normal, but the tremor you describe is not. If anything, it sounds more systemic, possibly even something like a small stroke, bleed, or clot. Dizziness and chest pain call for seeing his internist.

Best,
Laurie
 

Scaredwife

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Thankyou for your response. He was cleared with strokes/ heart attacks etc. The tremors did stop for now on his left side. I have a feeling he isn’t being comepletely honest with me, since I’m such a panicker.

I notice he isn’t drinking as he used too, he takes a sips and switches it through his mouth before swallowing.

I’m sick with worry and on the verge of crying like every minute of the day to a point I can’t even function. I know that’s not healthy mentally, but I can’t help it 🥺
 

lgelb

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Has he seen an ENT?
 

Scaredwife

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Not yet, but he will be referred to one. Neurologist thinks it’s stress. However our own doctor did find weakness on his left side and the neurologist did not.

The tongue twitches do seem to get less, only when he talks for a long time or just a lot. He is able to do everything as usual. The tremor comes and goes. More so when he is tired. His tongue started about 2,5 weeks ago, his chest pain around 9 months ago. And the tremor we also noticed 2,5 weeks ago.

His CK levels were 252, which has me even more concerned. The neurologist will give us a call about his bloodtest next week, but we already got the results online and it said it was high. (The neuro did have him do 10 squats about 10/20 minutes before blood testing)

I feel like maybe she’s missing something, we’re from a small town. Not saying I know better than a neuro though, so if she doesn’t even see a reason to investigate furder maybe I should just trust her.

I can’t help being concerned though, keep checking his tongue everyday like a control freak. I’m just really really scared.

I feel ashamed even posting here, since I know y’all going through such hard times or have gone through them. I never researched ALS that much until now, so for that learning process I am also thankful.

Thank you for taking the time to respond to me, sorry if my messages are chaotic, my head is all over the place.
 

Scaredwife

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Also, we noticed an eye twitch in his right eye and a significant difference in strength and muscle in his right upper arm. Is it even possible for ALS to progress this fast? We don’t really know which symptom was first, cause we never really payed attention to it as much as we do now. So we notice every little thing.

His clinical exam was normal, except for asymmetrical face which dissapears when he moves.
 

affected

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If you don't trust your doctor, go get another opinion.
We won't argue against a normal clinical exam.

We really can't do anything here as we can't see your husband. Please don't keep making him show you his tongue, how awful must that be for him?
CK levels are not used to diagnose ALS.
All the best.
 

Scaredwife

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You are completely right, I am being horrible at the moment. I try to contain myself. I keep watching him in his sleep, I know it’s not normal behaviour and I feel ashamed even asking you guys here. I truly appreciate you all taking the time to respond to me with everything already going on in your lives.

Do these symptoms sound like ALS to you? He is 29 years old and no family history of ALS.

Could it even progress this quickly? Symptoms with his tongue started July 8th.

As of now he experiences:

- in October 2021 the chest started, feeling heavy as if someone pushes on his chest. They are not constant, they come and go.

- 8 July Tongue feeling thick, heavy, twitching after a lot of talking or while getting angry/frustrated (seem to be less now, sometimes they come up)

- 13 July 1x muscle cramp left leg (I also had a cramp an hour before, maybe because of air conditioning?)

- 14 july general docter saying he’s detecting weakness left side compared to right. Neurologist reports no weakness or twitches only asymmetrical face witch dissapears when moved.

- 19 July muscle strain left arm

- 20 July eye twitches mostly when in rest

- 22 July muscle seem less left arm compared to right. Got a cramp 2 times on his fingers while playing board games. Also left hand.

- 24 July he had twitches on his dorsal muscle on his hand and his index finger. Lasted about 30 seconds. Also left hand.

If it was ALS could it even progress this fast? I do feel like he talks “wet” and his tongue seems to come more upfront when speaking but his mother doesn’t notice. I’m watching for every detail now so I’m not really a realliable source. I also see his neck moving while sleeping, may also be just his artery I guess 🥺

I’m really sorry for my hypochondriac questions. My mind is playing games with me as of the past few days. I will be asking for help to get this under control. This will be my last question unless something changes in his clinical exams. I’m really sorry for bothering you, you guys truly are really kind hearted people. Also, thank you for being blunt, I think in might have needed to hear that.

Please excuse my english!
 

Bestfriends14

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Please stop. Seriously, in the best interest of your well-being and the respect of the folks actually living with this disease, stop. You have already had your questions answered, yet are still not satisfied. That screams health anxiety and you being on this forum is only fanning the flames of your anxiety. I would like you to read aloud your posts on this forum and ask yourself how they sound. Read them aloud, not silently; your words will look very different when you do that. Then ask yourself, at this stage, after receiving all the answers you have asked thus far, if it is appropriate to continue asking the same questions, but in multiple different ways.

From this point, it is for the best to bring further questions to your GP and get help for your health anxiety. I sincerely wish you the best, but there is nothing the folks here can do for you. One last request, please stop badgering your husband by projecting your fears on to him. Please think of how your reactions are affecting him and others around you (including this forum).

Again, best of luck and take good care.
 

Scaredwife

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You’re right, thank you for being direct with me. So if I understand this clear I shouldn’t worry about ALS?

I wanted to push for an EMG, but I don’t want to unnecessarily take up precious medical time from people who might actually need it more, just so my mind is at peace.

Do you think an EMG is something we need to push for or don’t you guys see anything related to ALS that something like that would even be necessary?

I’ll try to take a break from dr.Google and I’m am sorry for al of my questions. Never meant to disrespect anyone, but I can clearly understand your frustrations with people like me.
 

affected

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We have already answered you. It is not appropriate to continue asking the terminally ill and their carers about this.
Please go talk this through honestly with your doctor.
 

lgelb

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To be fair, CK is elevated in a significant percentage of ALS patients and is being studied as a prognostic marker. However, it's not a diagnostic criterion.

It is more important to "push" for a systematic diagnostic process, follow up with the ENT, etc. than any one test. I don't see ALS in this, but if a normal EMG, or one that pointed to something else, such as an adult-onset myopathy, would reassure you both, you have the right to ask about it. If nothing else, that request might prompt more discussion about what possibilities still exist and what work needs to be done to rule them out.

Best,
Laurie
 

Nikki J

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It is also important to know that CPK is very non specific and can be elevated for any number of reasons. As Laurie says a percentage of PALS have elevated CPK but that doesn’t mean the reverse is true - the percentage of people who have elevated cpk in the non diagnosed population who have ALS is not that significant I think.
 

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Also important to note that I did not say CK levels are not sometimes elevated in PALS. I did say they are not a diagnostic criteria, but thanks for noting it. As stated, many people have elevated CK levels, either for a short period or a long period, who do not have ALS.
 

Scaredwife

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Just a quick update: I asked the neurologist about ALS and she did not see any reason to think about ALS. I asked her about my husband having a slightly positive hoffman's reflex, and elevated CK levels but she did not seem to be worried about anything. She did not even feel the need to do a follow-up appointment. She said his CK might be high because of omeprazol use and a slight hoffman reflex on the right side was normal.

She noticed I'm scared and to ease my mind she'll test his blood for CK again in about 1/2 weeks and will also book a follow-up appointment to see how things ar going. She thinks it's stress related.

We also noticed his tongue only "twitches" and feels "thick" when he is stressed, angry or irritated. During the holiday it seemed to be much less, unless we were in a situation where he became annoyed. I really hope it's just stress and it will not progress any further. I was able to put it beside me for a bit, but its still in the back of my mind sometimes. Nobody seems to notice anything different about him of his speech, which is a good thing.

Her call did ease my mind quite a bit and I was able to enjoy our holiday. I really want to thank you all for your help and I will keep you guys updated. I hope all of you and your family's are doing well. Im really sorry to bother you again, you have no idea how much i appreciate you guys and this forum.
 
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