Tongue and Throat Weakness prior to being diagnosed

[johnr2395]

Hi Everyone,

I was just curious as to the extent of weakness someone feels before showing symptoms of ALS. I've heard repeatedly that ALS is about muscle failure and not weakness, but would that mean there isn't really a period prior to which there would be any noticeable weakness in the muscle? In the case of bulbar onset, would your tongue be feeling normal one day, and then the next, you're slurring? Or in terms of swallowing, would you instantly just start choking on thin liquids like water?

I ask because I am sitting here terrified that I am showing some alarming symptoms I cant seem to explain. Of course, I have an appointment with a neurologist on Wednesday but slowly feel like I'm losing it.

I (29M) have been dealing with cervicogenic dizziness spells for the past 6 weeks which docs attributed to poor posture. After getting a CT scan and being cleared for brain tumors and aneurysms, I noticed a remarkable improvement. However, just a few weeks later I returned from a camping trip and noticed my left leg was starting to feel weak. I went on the Google rabbit hole and since then have been spiraling with anxiety. The next couple days saw the weakness spread up to my arm and eventually my mouth and throat. My leg and arm weakness isn't so much of a worry since I'm not showing any clinical weakness there, but my swallowing has been deteriorating over the past few days with what feels like a lump in my throat and food taking forever to make its way down without making me feel nauseated throughout the day. My tongue has also gotten considerably weaker and less coordinated, where I can easily push it back into my mouth with just one finger. So far I'm not slurring, but I feel like it's just a matter of time. I'm spending the days lying down with a crazy amount of fatigue and a 38-degree fever.

If anyone can chime in that would be great.

Cheers

 

[johnr2395]

Just to add on:

Swallowing my own saliva doesnt even feel complete. I feel like it takes 2/3 attempts to get things down now as opposed to before.

Even when I eat, im constantly burping hours after because it feels like the food is still making its way down.

My body is twitching mostly on my left side ( left calf, quad, back, abdomen) but that comes and goes. My tongue has some twitching and doesn't deviate to one side. My soft palate and uvula dont really move either when I open my mouth and say Ahh. It's kinda just hanging there?

 

[lgelb]

ALS is not "feeling weak."
It's being weak. Clinically. Unequivocally. The only person who can establish tongue weakness, say, is a clinician.
Fever of course is not an ALS symptom.
If you don't trust your PCP to suss out whether you have something treatable, find another. But you sound like you're using the Internet in place of a physical exam, which is only going to feed what I consider unfounded fears given the progression you have described.
If swallowing seems difficult or saliva an issue, of course, I would drink something besides water before, during, and after you eat. But you need to be monitored clinically, not here.

 

[johnr2395]

Thanks, lgelb for taking the time to post and reassuring me. It is much appreciated.

Since I posted I went to the neuro who looked at my cranial nerves and said nothing was wrong and that it was psychosomatic. The twitching in my body has mostly subsided except my left eye which seems to twitch whenever I flex my soft palate (weird). Started taking up activities like weekly therapy, yoga, and massages to relax as best I can.

However, for the past couple of weeks swallowing has been a bit of an issue where I feel like small food residue gets stuck in my throat and I can't swallow it down, or my throat gets irritated after drinking water after a couple of minutes and I have to cough.

I'm going to meet with a PCP soon and see if I can get a swallow test, but each day my fears grow that it could be bulbar onset.