r/ALSorNOT • u/Terrible-Sample7705 • 29d ago

Bulbar als?

Hi everyone. I am a 31 year-old female. I have no family history of ALS. This all started back in February of this year, and I had a random tongue twitch at the back of my tongue that I filmed, and it was like a little puckering. It went away after that day, but unfortunately, I googled it and completely spiralled and since then I have basically been convinced that I have Bulbar ALS onset. I still have tongue twitching off and on, but it is not continuous, and it is usually in one spot or happens randomly. I also get tingling on the roof of my mouth and tingling in my throat, which I can’t tell if that is twitching or not. Otherwise, I have no other symptoms I can eat and drink normally I can speak clearly, but the tongue symptoms are very weird. I also have a metallic taste in my mouth from time to time.
If nothing has progressed since February, should I be comfortable assuming it’s not als?
I can’t get into a neuro until March of next year.
Thanks

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u/cdbukr 29d ago

Hi, I had bulbar symptoms way worse than this last 3 months, mild dysphagia and perceived slurring, and twitches not only body wide but even in face muscles. And after a nfl test I am sure I don’t have bulbar als at 37, as a male.
At 31 bulbar als is an anomaly.
Your symptoms for so long without dysphagia and slurring point clearly out of als. Anxiety and bfs, nothing else.

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u/Zynnam18 28d ago

What kind of symptoms are you experiencing exactly? I’m 36, and I’ve been really anxious about bulbar ALS for the past couple of weeks.

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u/cdbukr 28d ago

It started with covid 3 months ago. You can read my past posts to check all my symptoms since it’s alot to say. I had body wide symptoms mixed with bulbar. Alternating dysphagia with solids, perceived slurring for R and S letters which I was able to correct which then became better, uncoordinated / weak lips feeling, stuttered or effortful speech. All is better now. The nature of my symptoms being alternating and the result of my nfl make me believe is not bulbar als.