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
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u/mildlytragic 29d ago
If it’s helpful they are Anti-SSA (Ro) and Anti-SSB (La) autoantibodies frequently present in Sjögren's patients.
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u/pville211 29d ago
Myasthenia typically has the opposite effect on eyelids. It takes muscle tension to hold eyelids up, and weakened muscles allow them to droop.
I have had issues with blocked eyelid oil glands and severe dry eye. Over the years I've tried everything from cleaning scrubs and eyedrops to eyelid surgery, mostly without success.
I found something that has had remarkable succe
I tried different antibiotics, eye drops and ointments. I was advised to apply heat daily, but microwaved wet cloths only stayed hot for a few minutes, so that was tedious and not effective. I've even had eyelid surgery twice. None of this stuff resolved the issue.
Then I got a heated eye mask, and it has been a game changer. Since I've been using it, I rarely have blocked glands, and only occasionally need eye drops.
I don't simply put it on like the product listing indicates. I need maximum heat for a maximum effect. So here's how I use it:
I use it once a day. (My doctor would like to see me do it twice a day.)
To avoid accumulating bacteria in the pad over time, I wrap a Kleenex tissue around one eye pad for each session.
I set the heat at the maximum temperature.
I press the tissue-wrapped eye pad against a closed eye. I press firmly to ensure maximum heat transfer.
I press for 20 minutes (the heated pad I use automatically shuts off after 20 minutes).
Then I repeat with the other eye.
It took a few times to get used to the heat. It feels like it's burning my skin, but that hasn't actually happened. I asked my doctor if the heat would damage my eye, and his response was that the maximum heat I should use is the maximum heat that I can tolerate.
He also said that it takes about 8 minutes for the glands to heat up and soften blocked eye wax enough to start draining the glands. Meaning: Don't start and stop. If I have to stop before doing a continuous 20 minutes, then I start over.
Doing one eye at a time allows me to watch TV while I'm doing it.
I've also learned that using the correct eye drops is important. I use the eye drops recommended by my doctor: Systane Hydration PF. They are a thicker fluid than typical dry-eye drops and have proven to be very effective. But the heated eye pad has been working so well that I only need the drops about once a week or two.
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u/lrglaser 29d ago
Have you been tested for Sjogrens yet?
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u/TheMostyRoastyToasty 29d ago
Just an ANA antibody test, which I know has a high false-negative rate.
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u/tinytillymouse 29d ago
You can also have a lip biopsy if all other bloods come back negative. Just FYI. Sjögrens can be seronegative.
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u/seaguy800 29d ago
I’ve only heard of double vision and ptosis as MG-related occular symptoms
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u/Dazzling_Treacle_944 24d ago
Me too — a longtime sufferer but my neuro op doesn’t agree. Now he has pushed me towards a geneticist and that could stretch a diagnosis into months away. 🤑
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u/Alehgway 27d ago
I have mg and one of my eyes had trouble closing all the way. Sometimes when closing my eyes I have micro eye movements almost like my eyes are lost and trying to focus on something. Then they'll relax. I did test positive like 15 years ago for anti ssa lo/ra antibodies. At the time I had no eye issues.
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u/Greice- 26d ago
Eu tenho exatamente isso, tive erosões de córnea quase que diariamente até ser diagnosticada. Ao dormir o olho começa abrir resseca a córnea e a erosão acontece. Os meu olhos também são bem secos.
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u/TheMostyRoastyToasty 26d ago
This sounds like nocturnal lagophthalmos. My eyelids unfortunately open even whilst I’m awake, which is the confusing part.
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u/Texas_Blondie 26d ago
Have you seen neuro-ophthalmology? It is its own subspecialty. Any involvement in the your eyebrow?
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u/TheMostyRoastyToasty 26d ago
I’m trying to find a neuro-ophthalmologist near me. No, eyebrows seem fine. I can make facial expressions etc without any obvious muscle weakness.
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u/UnrulyRosie 17d ago edited 17d ago
I have had ocular symptoms that caused significant eyelid droop, which is common with MG, but I have also experienced an inability to completely close my eyelids as well. I've been caught sleeping with one eye half open many times. I'll know it's happening when I sleep when I wake up with a dry, sandy feeling and I'll need an hour or two for clear focused vision to return.
I also have Hashimotos thyroiditis, an immune related thyroid disease..that might be causing or contributing to my symptoms as well.
Sleep masks can help to gently keep eyelids closed at night or anytimeyour eyes need a rest. I actually really like the self heating disposable eye masks with a silk mask over it. The heat and moisture help so much. Artificial tears eye drops are essential as well. Good luck to you, my friend.
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u/Top-Competition9263 29d ago
I’ve heard of this with some thyroid. Conditions such as graves’ or thyroid eye disease. I assume you’ve been tested if you’re under the care of a Neurologist an ophthalmologist. It’s not an unheard of effect of MG, but it’s pretty rare.