Tongue/ Bulbar Concerns

[joel1991]

Hey all
I have been having some weird stuff going on with my tongue lately. I have indeed read the stickies and those seem to help clarify a lot for me. Seemed to make things black and white when it came to symptoms... However, then I started to ready some of the posts on the site and now I am seeing a lot more grey. Let me tell you what is going on and then ask my questions.

For the past three weeks or so, my tongue has really been bothering me. One day I woke up and my tongue just felt off. It felt kind of tight and slow, just felt like it took more effort to speak than it did before. I ignored the awkward feeling for a few days, but gave in to temptation and googled tongue related symptoms… it lead me here. I really wish I would have just stayed off line, because for the past couple of weeks, I have had this growing concern that this weird feeling is related to ALS.

The heavy or slow tongue happens daily, but there are times when I am not aware of it. (During those times, everything feels normal) I constantly feel like I am slurring my words too and need to spend extra effort talking normally. I have asked multiple family members/friends if I have been slurring my words, they reply no. (I know the stickies say that others will notice the slurring first, but multiple stories on this site report that family and friends sometimes can’t tell a difference) At times, my tongue and speech just feel off and this is really concerning me now.

I am able to tent my cheeks with my tongue and move my tongue in and out/ side to side with out a problem. I whistle just fine and am having no swallowing issues either. I can tell no major change in my tone (can still sing and stuff). In my opinion, these are good signs. Even with all of that, I am still fighting a daily battle with this heavy/tight tongue thing.

If I was truly slurring my words, would I be able to whistle and move my tongue around?
With bulbar ALS, do individuals feel their tongue getting heavy and slow? Also, is slurring constant with bulbar or in the beginning does it come and go?

What are early other signs of bulbar onset? Like was there tightness or other things you noticed in advance? (just trying to see where my situation fits in)

Do I sound like those crazy health anxiety people that post? (If so, I apologies)

Also, I am a 24 year old white male with limited health insurance. Before I commit to having some very expensive test, want to make sure they are justified. Thank you for your time!

 

[joel1991]

Also notice that after I eat a lot of ice cream or ice, my tongue becomes very slow and hard to move. Only noticed that after I started having problems. I have no idea if this is related or just normal since my tongue is numb/cold. (Like other muscles when they get cold). I am feeling some stress about this issue today. It sucks...

 

[4tloml]

Joel, sorry to hear of your concerns, but you probably already know the answer to your post is for you to see a doctor. That is the only person who can get to the bottom of your symptom.

My husband had bulbar onset that started with slurred speech, but it was obvious to me long before it was to him. First thing he did when HE noticed changes was to make a doctor appointment. That really needs to be your next step as well, whether for a diagnosis or to ease your anxiety that it isn't ALS. I have a feeling that nothing we say here will ease your anxiety, and I get that, so please make that appointment and then let us know what the doc says.

Best regards to you.

 

[joel1991]

4tloml,

Thanks so much for your kind response. I think my last post was very anxiety driven. Of course my tongue will be numb and tight after eating a very cold food... Its a muscle and will respond accordingly like other muscles when they get cold. (Sorry if that seemed crazy, it was)

As for going to the doc, you are right. I know that is the only way to get a logical answer on the subject matter... Just have bad health insurance and not a ton of capital. So going would be a very huge investment for me. That is why I posted, just to see if I was blowing this out of proportion or if this sounded like the real deal.

Just confused since there are times when it seems bad and times when I feel fine.
Thanks again, and sorry to hear about your husband. Keep you guys in my thoughts!

 

[Atsugi]

Joel, rest assured you don't have ALS. You didn't describe ALS at all.

In ALS, a muscle (the tongue has muscles) suddenly becomes permanently limp and useless--paralyzed--because the motor nerve in the brain has been destroyed.

You already know you don't have a fatal disease. You said you were concerned about having little cash available. If I thought I was dying, I'd spend every cent I had, immediately, to prepare.

 

[joel1991]

Atsugi,

Thanks for the response. I am concerned, but trying to not let it get the best of me. I know ALS is rare, Bulbar onset is even more rare, and being 24 with that kind of onset is very rare. But nothing is impossible and that is what has me concerned. Just have never felt my tongue feel so heavy and tight before. Just worries me, but I know anxiety can play some nasty tricks too. Just trying to understand it and use what resource I do have available.

 

[ECpara]

My husband's bulbar onset ALS started with him "lisping", he noticed but I didn't. Fast forward about three months.....he started slurring his speech, this time we all noticed but he didn't. It got so bad he sounded like the town drunk. He insisted he was okay.......felt absolutely nothing. We all had to convince him to see a doctor. Your description of symptoms does not sound like ALS. But do see a doctor to put your mind at ease. And yes, a combination of being 24 and bulbar onset ALS.......infinitesimal.