bulbar als fears

[melfish]

Hi. I'm new here. 49-year-old female with a fear of bulbar ALS so severe, it's basically crippling me. I can't eat or sleep. This all started 10 weeks ago when I noticed the tip of tongue was slowly moving up and down on its own. This observation triggered a panic attack so severe, I ended up in the ER.
Since then, of course, I've been intently studying my tongue, and it quivers and twitches at rest and when extended. I've also noticed asymmetry and deviation when poking it out.
I now feel like I'm slurring and having trouble swallowing, but of course this may be anxiety. Yesterday, I noticed that my uvula deviates to the left and my soft palate is asymmetrical too.
ARGHHHH. I know how rare ALS is, and that bulbar ALS is rarer still, but I can't help freaking out.
I did have health anxiety really bad in my 20s, but I thought I'd put that crap behind me. Please, does this sound like ALS?

[Fishmanpa]

Please read this...

Positive thoughts

[melfish]

Thanks, Fishman
I've read that, but it's not alleviating my fears, mainly because of my age, I think. If I were 20-something, I'd be very relieved by it, but at almost 50 ...
When I was in the ER, the doctor said he'd not heard of any neurological disease presenting that way and sat there beside typing "twitching tongue" into google and having the AUDACITY to tell me there were no matches! ALS is the first thing that comes up! I guess he was just trying to ease my panic attack, but honestly ...

[Fishmanpa]

Read this a few times

Speech and swallowing issues

Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!

Complaints of difficulty swallowing and or a lump/ something in the throat are very common among our DIHALS visitors. Please look up globus and learn that it is a very common complaint especially among the stressed

Special note of tongue twitches. First if you stick out your tongue it will twitch. Neurologists examine our tongues at rest if they are looking for tongue fasciculations and those fasciculations are persistent not an occasional twitch. If you have been trying to examine your tongue stop!

Positive thoughts

[melfish]

Ha, I have the excess saliva too

Seriously, even though statistically the odds are slim, PEOPLE STILL GET IT. And having health anxiety isn't a magic pill that somehow protects me. Hypochondriacs get sick too! Why shouldn't it be me?

I just can't find an alternate explanation for this cluster of symptoms. It just fits bulbar ALS

[Fishmanpa]

Ok... well good luck. I hope you find some relief from your anxiety

Positive thoughts

[melfish]

Thank you for taking the time to reply

[melfish]

Does anyone know if twitching and quivering of the tongue can precede slurring speech? I feel like I'm often mispronouncing consonants, in particular.The twitching started (or I at least noticed it) two and a half months ago.

[Fishmanpa]

Read this thread... And search out some of the other ALS threads here. The pattern is quite similar and no one has it. In fact, in the several years I've been here, I've read dozens and dozens of ALS posts and no one has it. Just stay off the ALS forums and please don't post there seeking reassurance. It's disrespectful to those suffering.

Positive thoughts

[melfish]

Thanks again, Fish. I can only imagine how frustrating posts like mine must be, but when you're in it, it's all-consuming and logic is the first casualty. (I'd not dream of posting on an ALS forum unless I were at least in the diagnostic process)