Speech Problems - Involuntary whistling of S's

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Will26

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Two months ago, I started feeling a little pulse in the left side of my tongue. Maybe twice a day, and for all that I've stared and stared and stared at my tongue in the mirror, it's never been visible. Then, about two weeks ago, I started getting really anxious that I was tripping over certain phrases. My anxiety went through the roof, and I started twitching all over my body, and the left side of my tongue started twitching a lot more - like dozens of times per day, but it's still never been visible, I can only feel it, along the left side. Two days ago, it happened practically overnight, I started whistling my S's - I don't know if that is a common symptom, but I haven't been able to stop doing it since, and I've tried to stop, but it just won't go away. I'm not slurring, but this whistle is driving me crazy, and I'm calling the doctor on monday to get in for an examination as soon as possible. What are your opinions?
 

BethU

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Hi, Will ... it's probably a good idea to see a doctor if it's driving you crazy, but it doesn't sound anything like ALS to me.

My bulbar-onset ALS started with slurred words which got progressively worse, and months later developed into difficulty swallowing, too. I have tongue fasciculations, but have never felt a twitch. The fasics were discovered in a routine exam by an ENT who noted my speech impediment and the fasics and told me to see a neurologist. When I examine my tongue, the fasciculations are minute, and they are all over the surface. It is more like a "quivering." Almost three years into this, have still never "felt" a tongue twitch. I can also see considerable atrophy on my tongue.

I've never developed a whistling "S" sound, but this is only my experience. My sense is that if you can feel your tongue twitching, it"s not ALS. ALS twitching is usually VERY subtle, and rarely felt. It appears after weakness and atrophy, not before. It's not the first symptom.

Make that appointment and put your mind to rest. It might be something one or two speech therapy sessions can clear up.
 

Will26

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Thanks Beth :) Has anyone else ever noticed whistling, or is it usually a lisp or a slur?
 

Will26

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I thought I had read about bulbar onset patients who said they had felt buzzing/twitching before any speech problems developed? Doesn't it sometimes present that way?
 

CindyM

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Will- I have buzzing lips and sound like I have had one too many if I am over-tired. I also have muscle cramps and twitches in my face. But I do not have ALS. In fact, they cannot name the neuro-muscular disease I have. So rest your mind.
 

Will26

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Well, I was reading about lisps, and it said that whistling your Ss is considered a lisp, and I haven't been able to stop doing it. It's been constant ever since the 26th. I find it embarrassing. I'm seeing a doctor on Monday either way, I'm just looking for opinions as to whether this could be ALS in the mean time. Is it unusual for a lisp to come on within 24 hours like that? What am I supposed to make of this? I'm reminded of it everytime I speak.
 

Jennifer51

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I have bulbar...the first thing my doctor did was to make me stick my tongue out and he said it looked like it was full of wriggling worms...I had a lot of slurred speech before I went to him, excessive saliva and a little difficulty swallowing.... That was one year ago...speech is all but gone now, but I DO feel the twitches in my tongue...not often, but that was way after diagnosis, not before.
 

CindyM

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If speaking with a sudden lisp is your only symptom I would not sorry about ALS. If you do a search feature from the tab at the top of this screen, you will see that people had a lot of issues for a long time before they were told it was ALS.

And the severity of the symptoms needs to be taken into consideration, too. My buzzing lips and twitching mouth are not the same as Jen's worms-crawling thing. Hers is a sign that something serious is going on. My mouth contorts like crazy, as does much of my body, but it is still benign, meaning it is not life-threatening.
 

Will26

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What has me so scared is that my tongue only started twitching in October, and now I have this whistling lisp that I can't shake. I have a doctor's appointment tomorrow, and while I do have anxiety issues, tongue twitching coinciding with a new lisp has me really, really scared. I don't know what else to suspect. Do people ever just develop speech impediments overnight?
 

Al

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Sure they do Will. Strokes come to mind, brain tumors that finally grow large enouugh to hit the right spot and a half dozen other things that take too long to type. I'd be worrying about something like that long before ALS. Let's see what the doc has to say. Try to relax, it may help your symptoms.

AL.
 

brooksea

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My husband has bulbar onset and he does not lisp. I've talked to other pALS and they do not lisp. If anything, my husband has a big ol' slobbery S.

Loosing the first letter of the word in the beginning of the sentence- that's another story. I miss the first part of what my husband is trying to say and then he naturally repeats the last part! LOL His voice is weak at the beginning and gets stronger at the end.

When you need a letter board to be understood come back and "talk."
 
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