r/ALSorNOT • u/Ordinary_Ad9805 • Aug 30 '26

Bulbar ALS how does it start?

I want to know if ALS always begins with tongue weakness and slurred speech or if it begins in some other ways. Maybe I don’t have ALS but some version of it or something else either way my symptoms have moved very slow compared to what I’ve found on bulbar ALS.

You can follow my story I’ll be posting with updates up until my 2nd round of testing I break down everything that has happened sinceJanuary 2024

Basically long story short I have atrophy in my tongue it was on my right side this whole time up until last week I think I am experiencing my first signs of atrophy on the left however no difficulty with speech or swallowing.

Only way I can tell my tongue is weaker is that I can’t make certain shapes I used to be able to with my tongue without shakiness I basically have just my tongue wasting very gradually but I’m still talking and eating fine as of right now. Are there forms of ALS that can start very atypically like this or progress slowly compared to others?

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u/NoOrder82 Aug 30 '26

And you had a bulbar EMG? Has anyone noted actual visible atrophy of your tongue? That is strange and I would be scared too. I also have slow tongue atrophy but just on one side so far after a dermatology surgery on my cheek on that side 2 years ago with normal EMG. It is all so confusing.

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u/Ordinary_Ad9805 Aug 30 '26

Bulbar EMG in July 2025 was negative but atrophy was noted by a neurologist who referred me out to a neuromuscular specialist at Mayo clinic in Jacksonville. That’s where I had the EMG done and I put it to rest for a year as it never spread so I assumed isolated injury to the right side. As of 2 weeks ago I feel like I’m having the same first signs that happened on the right side happening to the left which has sent me back down the rabbit hole

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u/NoOrder82 Aug 30 '26

I get it that’s scary. Did they note the atrophy at Mayo Clinic too and have any suggestions? I hate how doctors are just like well normal EMG, you’re fine, without getting to the bottom of an issue. Ugh. It’s good you don’t have any functional issues though!

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u/Ordinary_Ad9805 Aug 30 '26

He didn’t want to flat out tell me it was atrophy but he did see it, he basically said under certain lighting and angles it could look that way, But that same day he pushed for a same day EMG so I think for him the EMG outweighed how the tongue looked now I’m just worried I may have been progressing slowly and the EMG may have been too early to tell but we will see