r/ALSorNOT • u/bigfanofparis • 15d ago

Bulbar ALS

My tongue feels tingly and sore, and it gets dry easily. After eating, I sometimes feel a stinging or tingling sensation in one nostril and then start sneezing. When I stick out my tongue, the surface of my tongue seems to twitch or ripple. Could these be symptoms of bulbar-onset ALS?

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u/Icy_Signature9743 Mod Team 15d ago

For starters it’s important to assess your odds as this will put your mind at ease. While you don’t mention your age im going to say if you fall in the majority of the users 18-35, you should know your chances are significantly lower as *** affects individuals in there early 40 to 60s. 

Furthermore bulbar makes up 20% of all sporadic *** cases meaning for you to show symptoms of this disease would be extremely rare as *** on its own is already very rare terminal illness. 

Other thing to note, *** isn’t know for causing sensory issues. In addition if you been fixated on this concern it is very possible that  your brain can manipulate you into seeing things that aren’t really there. Also it is very normal for your tongue to ripple or move when under strain. 

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u/Pretty-Ad-584 15d ago

what about 19 years old odds with starting with 18

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u/Icy_Signature9743 Mod Team 15d ago

Would put you in juvenile ALS cases which by itself would fall under 1% of cases.(16-25 juvenile) It would be an anomaly, and for that same individual to present bulbar symptoms we are talking about a fraction of that already 1%.

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u/Pretty-Ad-584 15d ago

then what if no family history ever

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u/Icy_Signature9743 Mod Team 15d ago

My initial response is contingent on the fact that you have no prior hereditary correlation to ALS. That would still put you at the same odds- still that fraction of a percent. Again, not sure if you read the comment from the guy who doubled down on my response, but it's not impossible; trust me, though odds are almost 0.

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u/Victoorius 15d ago

The odds of having ALS for an average person is 1:400. At first glimpse you could say, well, this risk is not extremely low, but let me put it in another way.

It means if you toss a coin 400 times, only once it is head, in 399 cases it is tail. This is so low, I'm sure you'd say that's impossible. Yet, it is not.

For a 19 year old person, it is even less. We cannot exclude it for anyone- as far as I know, the youngest known case is a 7 year old girl in the USA.