Bulbar ALS in Thirties

[cb1234]

I was wondering if anyone out there knew someone that was diagnosed with bulbar onset ALS in their thirties. I am a male and 33 and have been having swallowing issues and my tongue has felt very clumsy lately. The info I have found online indicates that most cases of bulbar are with older people, in their 50s or above. Do I have reason for concern?

[ktmj]

There are a host of things, most of them benign and treatable, that can cause that.

Could it be ALS? Possible, but not probable. Don't let yourself get fixated there OK?

Check with your doc and go from there.

There's no one here that can diagnose you - you sound reasonable and probably already know that. But we will be here for support, for hope for a benign issue you are having. Best wishes.

[katmomma]

Do you have any other symptoms besides the swallowing/clumsy tongue? I've been having symptoms for 4 months that started with all over twitching and excess saliva, which has now progressed to constant phlegm in throat and it seems like it takes a couple swallows to get the food all the way down. My emg two months ago was neg. Oh, forgot to say I am only 27, symtptoms started at 26. I've also read its really rare for younger peole to have bulbar onset. How long have ypou been notiicng your symptoms?

[cb1234]

Thanks for the positive words ktmj. I have a nero appt in two weeks, so hopefully we'll straighten things out then.

katmomma, I have been having these symptoms for about a month now. Prior to all this happening, I have been having muscle twitches all over for a couple of years too. Mostly calves, thigh, bicep, tricep and shoulder. Hopefully it's nothing serious.

[BethU]

cb ... almost all bulbar ALS starts with slurred speech.

You say your tongue "feels clumsy," but if it were actually clumsy, your speech would show it big time. Any change in tongue agility or strength shows up immediately in speech.

Usually, bulbar is a subtle start, like ALS in any other part of the body. In my case, others pointed out my speech problems to me before I could really hear them myself.

You don't say what "issues" you have with swallowing, but if your speech is normal, don't worry about tongue function. ALS is all about muscle weakness ... the inability to perform normal activities of living. It does not start with any part of the body "feeling funny" or unusual. There are no early warning bells ...

[cb1234]

Thanks for the info Beth. The issue I have with swallowing is that it's just a little harder getting things to go down, almost like I have to squeeze a bit harder to get it down. I don't have any issue that I can see with getting food to the back of my mouth for swallowing though.

The tongue issue I feel is that it feels kind of heavy towards the back and middle, which affects my speech a bit. I wouldn't say that I'm slurring, but I have to be careful when I speak or it feels like I'll jumble my words. I do have good tongue mobility though as I can move it all around my mouth in all directions (left, right, up, down) as well as stick it out all the way w/o issues.

Even though the odds are against it, it's just tough to shake the feeling that something is up with my tongue. Hopefully the neuro appt will clear things up.

[buddy77]

Bulbar onset has a average age of 65 years of age with a standard deviation of 8 years. This means that 97.5% of all people who are diagnosed with bulbar ALS are over 50 years old..... and 99.85% are over the age of 41.

Also, you have to remember that only 25% of people who get ALS start with bulbar so this even further reduces the odds.......

So statistically speaking, since ALS is already a fairly rare desease, and you then drop the odds for being bulbar and then for age factor, I would say that it is almost impossible to get bulbar ALS in your 30's or even 40's.....

[Zaphoon]

Beth,

Don't you wish there were early warning bells? Then, when first-time posters show up, we could ask, did you hear the early warning bells? That, of course, would lead to a big discussion as to what the bells were supposed to have sounded like, further leading into arguments over how a high sounding bell differentiated from low sounding ones, etc. etc. Short bells, long bells, shrill bells, pleasant bells.

You know, on second thought, I'm kind of glad there are no early warning bells.

Never mind....

Buddy, I like your statistical data presentation!

Zaphoon

[cb1234]

Thanks for the statistics buddy77. That helps for sure. For those with bulbar, my speech seems to be okay in the morning when I get up but seems to get more difficult as the day goes on and I speak more. If this really was bulbar, which I know is highly unlikely, then this kind of behavior would not be present right? My speech would be slurring regardless of if I rested my tongue for a while or not right?

[brooksea]

Your tongue is a muscle. And like Beth said, others would notice your speech was slurred and would before you noticed anything was wrong.

Buddy77: LOL I always knew my husband was "rare!"

[BethU]

Zophoon ... You know, on second thought, I'm kind of glad there are no early warning bells.

I absolutely agree! I think everybody should be totally surprised by ALS, just like we all are!

[Zaphoon]

Beth, it would be one thing if there were something preventive one could do if ALS had early warning bells but since no cure exists, well... shucks!

"Hey Pops! Didn't you just hear that ALS early warning bell go off in your head? You'd better get some of PZ's ALS instacure right away!"

I'm working on it, folks!

[indigosd]

or the tolling of the bells!

[Blackpool]

Zaphoon, keep ringing those bells for the start of a new day,I can't help but smile at the image of you ringing them. Thanks

[lovelovelove]

my mother has bulbar ALS , she started with getting veel mouth water , later came de systhom of spreeking probleem en swallowing probleem.
so different with yr.
i dont think you should worry.
better go to a doctor to have a check. ALS does not happen often in thirties.