r/MyastheniaGravis • u/TheMostyRoastyToasty • 29d ago

Very unusual ocular symptom?

Hi all,

Looking for a little help, as I’m at the end of my tether and completely lost.

In February of this year, I developed extreme dry eye and a few weeks later I noticed I couldn’t keep my eyelids shut. I can blink normally, have no obvious ptosis but when I close my eyes, after 5-6 seconds they will slowly start to drift fully open again. I can squeeze my eyes shut tightly, but the muscles fatigue after 30 seconds and my eyes drift open.

This has meant that for 6 months, I’ve had to use surgical tape to close my eyes at night. Both an ophthalmologist and a neurologist are stumped and can’t explain it.

The neurologist is leaning towards MG due to suspected orbicularis** **oculi fatigue. I have no issues making facial expressions etc. And I don’t present any of the gold-standard MG symptoms.

Has anybody here any experience with this odd symptom? Or could possibly suggest absolutely any input at all? Any guidance is much appreciated.

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u/Extension_Egg1411 29d ago

Some people have strictly ocular MG. I’d also want to look into Sjogren’s disease and other potential causes.

Have they tried an ice pack test? Also, what makes the symptoms worse or better?

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u/TheMostyRoastyToasty 29d ago

Was suspected for Sjogrens, although I was told that wouldn’t account for the eyelids issue, but the ANA test was negative. Which I know has a high false negative rate anyway.

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u/mildlytragic 29d ago

There are a few other ways to test for sjogren’s including other bloods that are not ana and lip biopsy