questions about early bulbar onset.

zachwar90

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Hello my name is zack. Everything started with a constant twitch 5 months ago. Soon after I had them on every part of my body. Face,tongue,scalp,neck,chest,stomach,hands,fingers,feet,butt,legs and arms.

This past week i have been inhaling saliva breathing through my nose. Also have a hard time swallowing food everytime i eat.

I noticed a wierd zapping feeling on the tip of my tongue 2 months ago and thats when i noticed the twitching.

I've been to the doctors and he told me to stick out my tongue. It quivers all over like gelatin. He referred me to a neurologist, but its going to take a month to see him. The thing that worries me is inhaling saliva not the twitching.

When i work out i can still lift the same weights I could months before i noticed symptoms. I am a 29 year old male.

Also no gerd as my doctor prescribed me anti acid medication a week go plus i watch what i eat. Still have the inhaling saliva and hard to swallow foods.

1. Can bulbar als start like this?

2. When twitching is caused by als would I have noticed tongue atropy already after two months?

3. Are swallowing problems more common than slurred speech?

thanks.
 
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KarenNWendyn

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First off, please read this if you have not already done so: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. Even tongue twitching is not specific for ALS.

The first sign of bulbar is generally slurred speech that others notice, not inhaling saliva breathing through your nose. That is not failure. I have difficulty speaking and swallowing due to ALS and have not inhaled saliva while breathing through my nose.

Keep working with your doctors. Feel free to update us after the neuro appointment, but I wouldn’t lose sleep worrying about this in the meantime.
 

zachwar90

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Thank you for the reply I appreciate it greatly! I forgot to mention also I have a slight delayed swallow reflex. I will update after neuro appointment thanks.
 

zachwar90

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Emg scheduled for july 16th. Reason for posting again is because I read about a guy with bulbar als. In the early stages he only had a few choking episodes which I have had also. He said his tongue had twitching while sticking it out but not at rest. I have them at rest and while sticking my tongue out. There is slight atrophy on my tongue which has gotten worse over the months. Neuro was a little worried when he looked at my tongue. My reflexs are normal and my strength is the same. No speech issues either. I have never had anxiety until i saw the neuro now its hard to sleep. Delayed swallowing reflex is getting worse. I posted a video of my tongue and his story is in my description.

 

KarenNWendyn

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I know you are anxious and worried, but since you have an EMG coming up in a couple weeks, I’m going to request that you not post further until you get the EMG results.

Tongue fasics are not specific for ALS. As I mentioned earlier, the first sign of bulbar is slurred speech that others notice. Please reread my previous response to you and the “read before posting” sticky.

We’re not a fan of videos here, especially tongue videos. Gross!
 

zachwar90

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Im sorry... will do
 

zachwar90

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Emg was today. It was suppose to be for tomorrow but the dr wont be in so they said they would fit me in. ncs was fine. that took like 15 min. Now about the EMG. He stuck a needle in my calve for 10 seconds then pulled it out and stuck it into my other calve for 10 seconds. Said i was fine and rushed me out. Are emgs usually that quick? Not joking 10 seconds and never asked me about anything else. He said he will do an upper body emg in august. I didnt even get to ask him any questions. BTW it was his idea for the emg. I never asked for one. Didnt give me the results or anything just seems odd.
 

zachwar90

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Also i am worried about me choking on saliva. Im suprised he did the emg in my legs. Now another long wait for the upper emg.
 

KarenNWendyn

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I realize you’re worried about bulbar. Yes, an EMG on the limbs is sufficient to rule out bulbar because if it were ALS, there would be widespread denervation including the legs. And yes, that would show up on EMG. The doctor doing the test obviously saw no concerns in those two muscles so he didn’t feel it was necessary to test other muscles at this time. I’m certain the upper extremity muscles will be fine too.

As I started previously, you don’t need to be here.
 

Kristina1

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Actually, my legs showed no abnormality on EMG study when I was diagnosed. I have bulbar onset and at the time of diagnosis my EMG showed abnormalities consistent with ALS in my tongue and thumb/left arm.

However, Zach, in your case ALS seems unlikely given a mostly normal clinical exam and the fact that you haven't described speech changes or loss of function (things you can't do, like inability to fasten buttons or turn the key in a lock). There are a lot of things that could cause the two things you mention. While you wait for the upper body EMG you could book an appointment with an ENT to investigate that front.
 

zachwar90

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Upper EMG is on the 7th. I choke on saliva while laying down. Every time I drink water I cough afterwards. Strained voice where I can’t yell. No weakness though that I have noticed. I can still lift 50 pound dumbbells. No clinical. My neurologist is through the state Medi-Cal. Not really straight forward.
 

zachwar90

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Kristina did you notice weakness before the voice/swallowing problems? Or that something was wrong?
 

Kristina1

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Zach, my voice went nasal. It sounded as if I was congested/had a cold, even though I was not sick at all. I choked on my saliva frequently, and due to palate weakness, I was unable to close off my sense of smell. I also had terrible charley-horse tongue cramps. Due to hyper reflexes my gag reflex was overactive and even brushing my teeth made me gag. Though I didn't realize it was connected, I also had inappropriate laughter and crying (pseudobulbar affect). For the speech/swallow/tongue/mouth stuff I initially sought out an ENT. I thought I had some kind of recurring sinus infection even though I didn't feel sick. When antibiotics and steroids did nothing the ENT proposed a minor surgical procedure to make one nostril less narrow. Obviously none of these treatments had any affect.

At the same time as all this I also had painless weakness in my hand and fingers that was gradually worsening. There were little things I couldn't do, like clip my nails or press the release button to my son's car seat. I had no idea this could be related to the speech/swallow stuff. I went to an orthopedic hand clinic and from there was promptly referred to neuro and diagnosed a few weeks later.

So while I did have the couple symptoms you describe, I also had a lot more going on and a clinical exam that was textbook for ALS.
 

zachwar90

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I wake up choking also. I have nasal speech but I didn’t think it was related. I have constant throat clearing. It’s driving me crazy. Thanks for the reply I really appreciate it. What was the time line? I have been having tongue twitching for 3 months now the delayed swallow reflex and the choking on saliva. I’m just wondering if you had these symptoms start altogether? Like your earliest symptoms?
 

zachwar90

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What was your diagnosis? Bulbar als or progressive bulbar palsy?
 
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