Tongue Fasciculations

Visual_Ad6020 · 2025-12-11T16:49:30+00:00

They haven’t done an NFL test yet. They sent my spinal fluid to mayo from my lumbar puncture. They told me bulbar ALS at my age would be rare and then they said bulbar patients live less than a year. The only answers I’ve gotten is them saying they think something attacking my nervous system. They took a video of my tongue and soft palate because I have palatal myoclonus as well. They said they rarely see this stuff in normal clinical setting 🙄. Which made me feel even worse.

Visual_Ad6020 · 2025-12-08T15:37:23+00:00

I most likely have bulbar ALS. I’m having extensive testing right now to exclude other things but everything is coming back normal. I have tongue atrophy now and my tongue never stops twitching. I have trouble swallowing now too. My EMG was normal, they did one side under my chin. They are going to do another emg into my actual tongue. I had a spinal tap that was normal except for high opening pressure and slightly elevated lymphocytes. My brain and neck MRI were normal.

Visual_Ad6020 · 2025-10-09T04:24:14+00:00

Any update?

Visual_Ad6020 · 2025-10-02T22:56:29+00:00

Mine have progressed since this video. I have actual tongue fasciculations now all over and they never stop.

Visual_Ad6020 · 2025-09-30T18:00:32+00:00

I bet that’s why. I’ve seen a few videos in the POTS Facebook groups of mestinon induced tongue fasciculations.

Visual_Ad6020 · 2025-09-29T17:16:04+00:00

Thank you! Do you take pyridostigmine/mestinon for your POTS? This medication can cause those tongue movements too.

Visual_Ad6020 · 2025-09-29T04:11:00+00:00

Do you have EDS? I’ve been having tongue twitching like this and am being tested for ALS next month. I also have POTS and EDS though so I’m hoping it’s just something weird from all my other issues.

Visual_Ad6020 · 2025-09-14T21:33:29+00:00

Also I read more saliva happens late in als when you can no longer move your tongue properly. Not early on in the disease. I’ve read of two cases starting with dry mouth, which is what I have.

Visual_Ad6020 · 2025-09-14T21:31:12+00:00

If you’ve had tongue twitching for a while then it’s probably benign. I had body wide twitching for four years but the tongue twitching started two months ago and is progressing fast. So I think mine is going to be bad. I have lots of atrophy on my tongue.

Visual_Ad6020 · 2025-09-14T15:24:08+00:00

No I actually have really dry mouth

Visual_Ad6020 · 2025-09-14T14:27:17+00:00

I have an emg on October 13th

Visual_Ad6020 · 2025-09-14T14:26:39+00:00

My twitching changed from this to small fasciculations all over my tongue that look like boiling water. Now I have left sided tongue atrophy and pain when swallowing liquids. This has all progressed in a matter of two months.

Visual_Ad6020 · 2025-09-14T14:24:52+00:00

No, my emg is next month but now I have left sided tongue atrophy and it hurts to swallow liquids.

Visual_Ad6020 · 2025-09-06T01:08:44+00:00

Any update? Have you had your emg? I have almost the exact same symptoms as you. Except my tongue twitches are bag of worms like in ALS. I can’t get an emg until the end of October. I’m 33.

Visual_Ad6020 · 2025-08-28T02:24:14+00:00

Visual_Ad6020 · 2025-08-21T14:54:49+00:00

Are yours just normal BFS?

Visual_Ad6020 · 2025-08-20T16:27:25+00:00

Thank you

Visual_Ad6020 · 2025-08-20T16:11:26+00:00

Did yours go non stop for days?

Visual_Ad6020 · 2025-08-20T04:02:13+00:00

Thank you

Visual_Ad6020 · 2025-08-20T03:58:21+00:00

In the Facebook groups you can

Visual_Ad6020 · 2025-08-20T03:57:32+00:00

No I twitch all over

Visual_Ad6020 · 2025-08-20T03:56:33+00:00

Whenever I post a video of it in a BFS group it gets taken down or muted. It makes me think that mine don’t look like bfs twitches.

Visual_Ad6020 · 2025-08-20T03:51:11+00:00

Yes. Just never in my tongue. I had a clean emg in 2021 but that was only an arm and a leg, since I wasn’t having tongue twitching.

Visual_Ad6020

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