One of my first symptoms were my eyes drooping and eyes not closing well, mostly at night.. I wake up with dry eyes... Some nights it feels like I closed them just fine, but other times I wake up and feel like they were half open all night long.. Do any of you have this problem? If so what do yall do about it? Can I cause permanent damage to my eyes from this? I have such weird vision from the double vision anyways, it's hard to tell if any of it is from dry eyes or just double vision from muscle weakness.

I have tried putting in moisturizing drops, but I don't feel like it makes a big difference, and then just makes my eyes goopy, which I do not like, but I'll do it if need be!

Hi,

I have this problem, and yes, dry eyes can cause long term, serious issues. I would suggest you see an optometrist for an exam to see how inflamed or damaged your corneas are, so you have a baseline.

As for the dry eyes, there are things you can do: warm moist compresses in the evening, use of moisturing ointment or gel, sleep goggles to create little "terrariums" to keep your eyes moist, steroid eye drops to control inflammation, omega 3 oils (flax or fish) taken daily...the list continues.

I've tried all of the above, with varied success. Even though I am largely symptom free from MG thanks to the reboot, my eyes seem to have sustained permanent damage from the MG (I'm MuSK positive) and I'll be dealing with the dry eye issue forever. Right now I'm good with a combo of good eyelid hygiene, steroid drops when needed, omega oil and ointment when sleeping as needed (I've gotten where I can tell before bed if it will be a "good" or "bad" eye night.)

Dry eyes do need to be taken seriously. I can no longer wear contacts, and I have to be really careful about what cosmetic products to use around my eyes. I may be an extreme case, so hopefully you will find a solution that is simpler than mine. LOL

Hope this helps.

I just want to add: it makes total sense that weak eye closure would result in dry eyes. But MG patients who have dry eyes without eye-closure problems should be aware that dry eyes, along with a dry mouth, can also be a sign of LEMS or of Sjogren's. Seronegative MG patients might have LEMS, and Sjogren's is an autoimmune disease that is more common among MG patients.

Abby

I have an ophthalmologist appointment next week. I also have a lot of eye irritation and I'm glad you brought this up. My eyes don't open or close just right.

Thank yall!! Sorry yall have this issue too, but guess I'm glad I'm not alone!

I'll try to take those tips as far as protecting my eyes.. I went to a neuroopthamologist a year or so ago and he noted irritation and dryness of my eyes and base of eyelashes.. along with ptosis ..

Mine don't close or open just right either!!! It's so weird how some days/nights are better than others.. when I"m sure my blinking doesn't change much from day to day- guess like yall have said in the past, if I overdo it or am weak elsewhere it travels though the rest of me!

abby- at one time they thought I must have neurologic sjogrens.. but then later thought.. maybe not.. honestly I think LEMS would be the best "fit" for a diagnosis.. i have proven non length dependent small fiber neuropathy (from an epidermal nerve biopsy).. which could go along with either sjogrens or LEMS (or many other things).. but LEMS would really make sense in so many ways.. I'll talk to the neuro more about this next visit too..

Thank yall!