Concerns about ALS

[Elisetoile]

Hello, thank you very much for adding me. As the title shows I have concerns that I may have ALS. This is a very distressing time as I have not been able to see a neurologist in person and have some worrisome symptoms happening. I’m 39 years old and have three little girls who are everything to me.

I started widespread twitching about two months ago, had it everywhere. I mainly notice it at night. I tried to remain calm and I visited my family doctor who said it was most likely fine but they’ll refer me to a neurologist. I waited and waited and finally got an apt for May 28, only to have to reschedule for June 8 because of covid-19. Up until last week it was only twitching and it would come and go, some days not so bad and some days having a lot. I had kind of resigned myself to this but then I started to feel an odd tired feeling in my tongue (would get tired out and sore on the sides) and an uncomfortable tight feeling in my throat after talking. I also noticed that I’m waking up super dry in the mouth and discovered that my mouth is hanging open when I sleep for some reason. Now this wakes me up at night as I start out with it closed and feel it open up and my tongue falling down from the roof of my mouth. I have also had discomfort in swallowing on the right side now going on about 1.5 years which I assumed was from GERD(on and off, taking gaviscon for this). The new sensations worried me so I tried calling the Cleveland clinic and was able to do a teleconference with a neuro from there who only asked some basic questions. He said I could have an EMG done if I want so I set that up and luckily they fit me in the for that next day(April 30). They tested my left leg and arm(9 total pricks). The results came back normal and I was satisfied with that for a few days. However, two nights ago I got the urge to yawn and it seems that I can no longer complete a yawn. I get the first part out but the rest is not happening like normal. This reminds me of the “failure not feeling” saying and I find it very distressing. Not sure if anyone has input for me, I currently have the neuro apt still scheduled but he’s not a neuromuscular doc and I’m wondering if I should try to get a referral for one of those? Thanks for any advice you have.

 

[KarenNWendyn]

Please read this if you have not already done so Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

You’re not describing ALS. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. The first sign of bulbar tends to be slurred speech that others notice. I have bulbar involvement, and my mouth opens widely when I yawn.

The unremarkable EMG should put your mind at ease. See the regular neurologist. S/he can still do a thorough evaluation and let you know if there are additional concerns.

 

[Elisetoile]

I appreciate your reply. I just wasn’t sure if possibly there is a muscle in there not working properly anymore to fully yawn.

 

[affected]

If you read that post from Karen again and really absorb it all it will help you a lot. You don't have ALS symptoms

 

[KimT]

Nothing you posted sounds like ALS.

 

[lgelb]

EMGs show abnormalities in multiple muscles tested in ALS. You don't have to worry that the yawning muscle was missed. If you are mouth breathing in sleep, that can lead to dry mouth and a stiff jaw. You might want to video your sleep or ask someone else to watch for this. You can also try a stretchy hair band around your chin/head to overcome this and work your way up to other solutions. You can also ask about an in-home sleep study, and there are apps to give you more info about your sleep.