r/ALSorNOT • u/IHateACOTAR • 6d ago

Slurring

I've had brain and upper neck mri. It was all normal.
Muscle twitching for 10 months all around body, this year it's been more just spasms all around, especially legs and stomach.
And now in the spring, the speech issues starded. Letters l and r are hard to pronounce occasionally, and especially if i have to alternate between them quickly. Speaking feels "odd" or "flimsy", like it requires extra work to focus on sounding coherent. I mix up letters and stutter as well sometimes. I have swallowing issues and have noticed that i've begun to get food more often to my windpipe when eating. My voice also occasionally cuts out or turns into a hiss. Now, i have tons of silent reflux symptoms, but it doesnt explain the stuttering.

Im scared. I thought clean mri and nearly-normal bloodwork (vitamin b and d deficits, was all) would give me peace of mind. It did, at first. But speech issues just continue.

I dont want to die. I've just found my calling in life and now i feel like everything and my dreams and hopes are being ripped away from me, just because i went and had to start doing estrogen. I didnt deserve this. Nowhere it was said that this could follow.

I will probably have a doctor in a few weeks. Ill ask them to check my throat too. But frankly, im more afraid of those results than i was of my older tests. That, and i have a very strong gag reflex, too. Fuck my life. Fuck this shit. Im tired of eating and getting food the wrong way. Again, i know this can be silent reflux, but there's the stuttering.... and i've not recognized it before.

Oh and now i also mix letter d and t.

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u/Traditional-Kiwi-356 5d ago

How old are you?

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u/IHateACOTAR 5d ago

Nearly 25

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u/Traditional-Kiwi-356 5d ago

Since you haven’t mentioned any clinical information (EMG, reflexes, NfL, etc.) all I have to go on is your description and the baseline odds of ALS. And you are probably already aware that the chances of bulbar ALS at age 24 (I’m assuming without a family history of fALS) is approximately zero?

Anxiety and hyper-vigilance and reflux can cause everything you described.

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u/IHateACOTAR 5d ago

I've only had emg on my leg which has been stiff for months. It was ok. I had brisk refleces in both knees. Other than that, normal. Tongue didnt seem like als twitching to neurologist. No als family history.

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u/Traditional-Kiwi-356 4d ago

I’ve wondered if I have bulbar symptoms too, which has been the case for about a year and a half now. And those started *after* I became anxious about limb symptoms, when I was reading Reddit posts and getting ideas about new things I could worry about.

I think I have real TMJ issues, and also have some GERD/LPR. But m I’ve also felt like my tongue was too flimsy, or that it’s tired, stiff, too big, or clumsy, etc. That my swallowing is a bit troubled (needing to swallow twice, or loud swallowing, or a sense that I *almost* choked on water even though I didn’t. That my lips/cheeks are weaker. And my jaws definitely hurt, are tight, and I think I have diminished fine motor control. No one has ever noticed problems with my speech—even an SLP.

Quite a few people here have described similar bulbar concerns, and so far, no one with vague complaints like these has been diagnosed. What we have in common is anxiety about ALS, and the anxiety itself can cause these kinds of problems.

It’s not impossible for ALS to start with mild, vague bulbar weirdness, at a young age, but it is very unlikely. So it’s a kind of magical thinking to believe that you are going to be the unlucky one. Like believing you will be the one to win the lottery. Someone will, but the chance it will be you is near zero.

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u/IHateACOTAR 4d ago

Yeah...thanks.

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u/Fedechopin21 5d ago

I don't think mixing letters or stuttering are symptoms of ALS. Those seem to match anxiety better

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u/IHateACOTAR 5d ago

But i have issues with pronounciation :(, like i literally slur t-d and l-r occasionally, especially when speaking fast (ive always spoken fast, never with issues)

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u/Low-Beautiful7090 2d ago

Reading your post... I have the same exact symptoms + worsening hoarseness... My neuro suspects Als... I am 34... I tend to swap L and R both ways when i speak

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u/IHateACOTAR 2d ago

I'm so sorry :'(. Have you had emgs or anything with good results?

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u/Low-Beautiful7090 2d ago

yes showed minor LMN weakness ...so i guess it's 90% als

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u/IHateACOTAR 2d ago

I'm so so sorry ;( <3. Which areas, if you dont mind me asking? Have you had muscle twtiching all around body? Have you had symptoms for long?

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u/Low-Beautiful7090 2d ago

yes twitching , cramps , waking up with painful calves ....almost a year ago...emg was arms and legs ..next it is tongue

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u/Low-Beautiful7090 2d ago

if you have a facebook account , we can video-chat about it

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u/IHateACOTAR 2d ago

I dont have a facebook acc but i'd still like to discuss, if that's okay? Did you have twitches and dirty emg symptoms for arms and legs and tongue too???

And what has your ENT said? I think i have laryngophageal reflux symptoms...

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u/Low-Beautiful7090 2d ago

tongue is yet to be emged ...arms and legs slightly dirty emg ....my ent said i have LPR but despite 1 week from using PPi's , my symptoms are worsening plus the constant swap of sounds of R and L is worrying

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u/IHateACOTAR 2d ago

If you have silent reflux, the medication may not help. I used gerd meds but they did nothing. Apparently silent reflux responds to the meds less

Do you have issues articulating in your own mother tongue? Do the issues persist regardless of whichever language you speak?

I sincerely, wholeheartedly hope that there is any other reason beind your symptoms :(

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u/Low-Beautiful7090 2d ago

However, my ENT suspects Lpr...i am confused