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Emiel

New member
Joined
Aug 28, 2014
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Reason
Learn about ALS
Country
DE
State
Germany
City
Berlin
Hi all,
I am nearly 30 years old, having fasciculations for a few years, checked by a neurologist in Berlin and deemed benign.
Fast forward, I started noticing pronounced fatiguability of chewing muscles and possibly tongue...well I cannot tell for sure. It is not a weakness per se, it gets fatigued and then it even hurts (chewing). Doctor informed me that it might be MND but another told me that this not typical for a MND - plain weakness is. He mentioned mystenia gravis but said i dont other symptoms.
Also I would like to ask your opinion. A did a search on this forum and found a few posts mentioning that there was no tiredness or feeling like that, just weakness. That doctor (the first one) scared the hell out of me..and did not offer anything.
Thank you
Ema
 
See a neurologist.
 
Well I did and I posted what I was told. One said it could be weakness, the other said that never heard such a complaint from ab ALS patient (which is a bit consistent what I have read here) but I am just looking for reassurance. Thanks
 
From so little information, we can hardly offer an opinion, except to listen to your doctors and try not toe worry about such a rare disease. There are over a hundred MND diseases. It would be strange indeed if ALS started in the tongue.
 
Thanks. Well, I do not have any other issues. I'm just curious if tiredness/pain in chewing muscles/tongue was a presenting symptom for someone with bulbar onset.
Sorry to bother, just terribly scared
 
My husband's ALS did start in the tongue. He has never experienced a tired feeling chewing and there has never been pain. He started slurring his speech, that was the first symptom, and it was due to not being able to move his tongue specifically to make certain sounds. Then his speech started to slow up in an effort to talk more clearly. But it only got worse (he can no longer talk). When he was diagnosed, the doctor pointed our to us the severe fasciculations he had in his tongue! I had never noticed and either did my husband (I think he ignored them). But there they were! Eating was a problem, too, he had difficulty moving food around in his mouth and that, too, just continued to get worse (he can no longer eat or drink, nor can he swallow his own saliva). So I'm certain you do not have bulbar onset ALS, your symptoms aren't anything like my husband's. Rest easy and good luck!
 
ECpara, thank you for the description. I am worried that the moving food around the mouth might be what I have as some thick food feels difficult and tires my tongue muscle.
 
From what I have learned, BFS (Benign Fascultation Syndrome) can include the tongue. With BFS it is quite common to feel a tiredness or soreness in the affected muscles.

My advice if you have pain in the jaw (chewing etc) would be to go back to your GP and have an additional exam to exclude temporomandibular issues. These issues can come from simply clenching your jaw out of stress or grinding your teeth when you sleep, but can also have underlying causes (not MND)

Nothing you mention sounds at all like bulbar ALS. The presenting common symptoms of bulbar ALS are slurred speech and problems swallowing liquids (choking).
 
Emiel, my husband's tongue never "felt tired", it just failed to do what he needed it to do. No fatigue. As mentioned, his talking was the major obstacle. If your tongue was affected you would be having problems with speech. That was more obvious than any eating problems.
 
My mom had bulbar onset too. And it was the same as where you're all saying. She slurred her words. Very minor in the beginning. Then we suspected maybe she was drinking (she wasn't). She would choke on liquids. Eventually also lost the ability to speak and swallow. She didn't complain about tiredness of the muscles just that they wouldn't operate the way they always used to.
 
Thank you for all your replies..though it breaks my heart.

I suspect this is all in my head, probably focusing more on things I never paid attention to before.

One final thing, if you do not mind - I too notice that I often have small crumbs of food remaining in the back of throat that I cannot simply swallow. Interestingly, I asked my partner and he told me that when he thinks about that, he too feels there are particles left in the back of his throat.
but I panic, I somehow remember this was mentioned as a sign that tongue does not work properly..

Sorry to bother, I really try to work on my anxiety
 
Honey you have had a good range of replies from people who have experienced this first hand.

My husband was bulbar onset, and I tell you the same as the others - slurred speech and choking on liquids is the first symptoms. He was dead within 11 months of being diagnosed.

Small crumbs in the back of the throat is not a symptom of ALS, take a drink of water, should be a simple fix.

Please go back and see your doctor and tell them plainly of your anxiety so they can help you to deal with it. Anxiety is obviously causing you a lot of distress.

You should now stay away from here, work with your doctor or join a forum for health anxiety. You have received great advice and support in this thread, please believe us and move on.

All the best in your search for the problem.
 
Hello,
I have seen a neuromuscular specialist. He checked my mouth, tongue and jaw muscles (tested their endurance) and said that everything works just fine. He implied that the problem might be in my head. But I am scared, I cannot eat things I ate before because my tongue simply gets fatigued and moves hardly through the substance in my mouth. Along with fasciculations, how can I think this is just in my head?
 
Your neurologist has given an opinion which is the same as ours. Not MND. Please look elsewhere. It was suggested above you consider bfs or alternatively explore a problem with your tmj. And Anxiety could indeed also account for your symptoms as the mind is very powerful.
We truly wish you well but your answers are not here . Good luck, it is truly time to move on,emotionally and in actuality and leave this board,rejoicing you have no reason to stay
 
Thank you Nikki J. The only reason I am still here is that somewhere I read that a patient did feel a fatique of tongue that was heralding its weakness. And it scares me. I do hope its BFS with something else.
 
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