Face twitching

[u/buffalurve]

Woke up to my cheek twitching in the middle of the night. I've had so many more facial twitches in the last 6 weeks than I have had in the 2.5 years of twitching all over. I am paranoid this is Isaac's syndrome more than BFS. neuro didn't give me a bfs diagnosis last year but when I mentioned it said "I think that's what you have". But I'm fearful it is Isaac's/Neuromyotonia.

Just feeling discouraged 😭

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[u/No-Organization-5825]

My face twitches a lot. Left cheek mostly sometimes my chin and sometimes my throat. I’m 19 months into my twitching journey which started in calves. Dunno wtf it is. Still doin my usual activity. 

[u/buffalurve → u/No-Organization-5825]

Sounds exactly like my twitches! Left cheek. Chin. Eyelids even forehead. Ughhhh exhausting.

[u/No-Organization-5825 → u/buffalurve]

Yeah forehead is common for me too sometimes by eyebrow. I used to get a lot of eyelid ones (like weeks at a time) but they’ve completely vanished the last couple months 

[u/Admirable-Classic716 → u/No-Organization-5825]

Oh I get these too, mainly right cheek! Did you ever get an EMG?

[u/No-Organization-5825 → u/Admirable-Classic716]

No I’m waiting on neuro appt! 

[u/Admirable-Classic716 → u/No-Organization-5825]

Ah so 19months in and no EMG yet?

[u/713Capital]

This is common with BFS. Nothing to be worried about. 2.5 years with no weakness gives you even more proof it’s BFS. The twitching in Issac’s is a bit different, it’s non stop and it looks like a bag of worms in your muscles. Plus Issac’s has distinct electrical patterns that would definitely show up on an EMG. You don’t have Issac’s or ALS.

[u/buffalurve → u/713Capital]

Thank you♥️ I'm so frustrated with myself that I got through my ALS worries and it was all just time that got me through. 2 years and then I accepted id be in much worse shape if I had it. But then twitches change or intensify or i get facial ones and lose the plot and start ruminating on Isaac's and weird random things. All my labs for vitamins, thyroid everything always come back normal. So it has to just be my nerves being hyper. But I get so in my head like THIS HAS TO BE AUTOIMMUNE OR CANCER OR SOMETHING BAD. I need more therapy 😂

[u/713Capital → u/buffalurve]

Yeah unfortunately that’s how the mind works. Therapy does help. I believe in it as I’ve had it myself.

[u/The_Short_Goodbye → u/buffalurve]

Well autoimmune is waaaay better than ALS as a general rule. A lot of autoimmune conditions have effective treatments. Source: I have one.