Contemplating bulbar onset.

LeJinster

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First of all I want to start of by saying how much I respect everyone on this forum and everyone diagnosed with this horrible illness. I truly wish you all the best.

So I’m a 19 year old male (with horrible health anxiety, I know.) and recently some things have been troubling me.

It all started about two months ago. I’m a chronic twitcher, meaning I’ve had twitches all over my body for pretty much my entire life and never thought anything of it until I heard of ALS. But, still, the twitches weren’t constant, and are all over my body so I just ignored it. Then I began to have twitches in my tongue, which of course freaked me out because I had never had any there before that I noticed.

Then I began thinking that my speech was slurring, although nobody seemed to notice anything. It just felt difficult to pronounce words and speak properly, like it took more energy than it should have. I frequently trip up and stumble on my words, but I can always go back and say it properly the second time. I could stick my tongue out, up and down, side to side, and move it quickly so I wasn’t overly concerned yet.

Then it just kept getting worse. The twitches died down for maybe a week or so and have come back with a vengeance. I feel one or two every 30 minutes or so pretty consistently for the last few days. Some of them almost feel like cramps. I examined my tongue at rest and couldn’t see anything really alarming, although it does move around a bit and there is an occasional twitch/spasm.

And now I’m even more freaked out because my tongue feels extremely weak now. It’s difficult to press it against my cheeks very hard, difficult to hold it out for longer periods of time, and difficult to rub it against my teeth like I normally would. It also feels very hard to speak properly. According to my girlfriend I sound okay and she hasn’t noticed anything yet. But despite this I feel like I’m absolutely slurring and that I sound pretty significantly different. My tongue also feels like it’s vibrating when I stick it out against something like my teeth/cheek. It trembles a bit as well. I can still stick it out, up, to the side, and everything, but it feels way more difficult to do so.

So far my swallowing seems fine. It’s a little harder sometimes, and I do notice that very occasionally I’ll choke on saliva/water or it will go down the wrong pipe, but nothing significantly concerning.

I should also note that I grind my teeth and clench my jaw, A LOT. I have a night guard for this, that I’ve worn pretty much 24/7 lately because it helps me not to focus on my speech and my tongue. It does cause me to slur tho, because it’s a pretty thick guard. My girlfriend thinks that because I’ve left it in for so long that it’s messing with the way I perceive talking.

Anyway. Does any of what I’ve discussed here seem like a cause for concern? Do I have a reason to be worried? Please let me know as I can not let go of this fear and it’s kinda ruining my life at the moment.

Thank you so much for your time, I hope everyone is well and has a great day.
 

ShiftKicker

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Hi there-

Please read here: Read Before Posting

Then visit with your doctor as a next step if the above does not reassure you. It's pretty clear you have significant health anxiety, so visiting a forum for those with ALS is probably not the best first step, as the reassurance of strangers on the internet may not be as reassuring as a doctor who can examine you in person.

Take care and please only post after you've seen a doctor.
 

LeJinster

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Sorry I should have mentioned this as well. I went to my PCP a month ago and got checked out. Told her about my concerns and she said everything looked and sounded fine.
 

ShiftKicker

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Well, folk here really couldn't argue with that. A doctor can observe how things are working, and if they don't see anything, then there's not much more people here can go with. If the worry is prompting you to do online research and post in a forum dedicated to those with ALS and their caregivers, it might be time to go back to your doctor and talk to them about that.

Again, please no more posting unless there's something new from a doctor you have questions about. No More Panic is a good online forum. And r/ MuscleTwitch is a good place too.
 

lgelb

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No and no, though wearing a nightguard 24/7 may not be ideal for your jaw -- your dentist can advise on that.

If your gf doesn't see a problem, tbh, there isn't one -- except in your mind. Health anxiety is common and treatable, so I would seek counseling, or better counseling.

Best,
Laurie
 

rmt

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Do NOT wear a mouth guard 24/7. It will cause a LOT of problems with you teeth, bite and jaw (my dad is a dentist and we just had this exact discussion). Go to your dentist and find out what they think you should do. But you need to take the guard out for at least 4-6 hours a day (and more than that is better).
 
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