I don't really have much problem with ptosis of my upper eyelids, but recently my right lower eyelid is sagging down and away, especially at the outer part (farther from nose part), especially later in the day or after working on the computer (making my eyes work, which they generally don't do well).

Any chance this could be an MG thing, or am I developing yet another eye problem to add to my collection?

There are muscles below the eyes as well. If the lower eye muscles become worse after an activity, as you said, then they are fatigued from MG. So, yes, this is probably MG!

It wouldn't hurt to be checked out by an eye doctor, if there is a change in your vision.

Some eye changes (i.e., larger eye area) can be from Grave's disease, for example.

About two weeks after my MG crisis, I was putting some makeup on for the 2-week followup. I was holding a mirror with my left hand for only about 5 minutes. My left hand contorted so badly that it didn't recover for quite a while. How MG affects us depends upon the relative stability of our condition plus the intensity of whatever activity we are doing and for how long. Sounds like a mathematical equation, but MG is not predictable.

You could try having a small fan (like the Travelon ones that sit on the table or can be handheld) blowing on your face while at the computer. Also, turning down the light on the computer might help. If you can, rest your eyes periodically.

I hope that helps.


Annie

I practically live at my various ophthalmologists (since they specialize, I have one for each problem....). If they gave out frequent flier miles, I'd be traveling around the globe for about the tenth time by now. If they gave out toasters and blenders like banks used to, I'd have a warehouse full. During one phase, I was at the office so often we were joking about them giving me one of the small rooms in the back to live in.

Will be calling them tomorrow. Same eye is now acting so overworked, that the muscles on top are sore. Sore to the touch, not just movement. Gets better with hours of rest, as in patch the eye closed, but that's not so good for doing everything else in life, as this is my dominant eye and the other eye has distortion problems as well, and my balance is not good to begin with, and....

Just a barrel of fun, isn't it.

No, MG is definitely not fun. And even when MG is stable, the disease can still surprise us. I'm glad you have eye doctors who help you!

There's only so much that can be done with the eye muscles in MG. Some people on immunosuppressants don't have issues. Pred only does so much, and hurts so much more. When the eyes are worse, that's a sign that MG is worse elsewhere.

Also, due to the pressure on the eye, you might be prone to retinal issues. So I hope you will seek out care if you see any floaters.

I know this sounds like a broken record, but if you haven't already had your B12 checked, please do. Sore to the touch sounds like a nerve issue (or inflammation).

Is the balance issue from MG? Might you have something else going on? Don't assume all symptoms are from MG.

I wish I had never heard of MG. Sure, some people do great. But its the unrelenting nature of this illness that is so hard to cope with day in and day out. A great attitude helps. But that's kind of like being in denial! I'm grateful there are people who are unaffected by MG. But there are a lot of people who continue to struggle. (Rant over).

I hope you will find some relief!


Annie

The slightly dizzy/balance thing started long ago, and after extensive, very unpleasant testing, they concluded it's in my brain, not my ears, not my eyes. So sorry, nothing to be done, go have a nice life. Combine that with weak muscles, and mysteriously swelling, self-spraining, painful, tendon-splitting, failing joints (but not rheumatoid arthritis, blood tests don't show it) and wonky eyesight, oh, it's a barrel of monkeys worth of fun.

I've got five 60g pills of mestinon a day. That's it. Neurologist won't give any more, won't do anything more. She doesn't even know (her own words) if that much is safe. (Yet then she tried to switch me to two 180mg ER pyridostigmine a day, which, of course, didn't work well. Um, Doc, 5x60=300mg, but 2x180=360mg, so how can you think the first is too much and unsafe...??!)

Mestinon works. Miracle drug for me. It works. Casual acquaintances comment on how much better I look when I am on it. But....

Officially, I am not even diagnosed. She won't call it MG because I don't have a positive AChR or MuSK, and nothing really shows on the EMG. She's never heard of LRP4, nor is she interested in looking it up, because I've told her about it twice so far, and she just says "I don't know anything about that."

She sent me to a fancy neurologist at an Ivy League university health system nearby, to have him do the diagnosis. Only, he won't diagnose without a positive test on something. He won't speculate on what else it could be. He won't explain what else it could be. He won't tell me even IF there are other avenues to investigate if the LRP4 test comes back negative. He won't tell me IF there are other doctors or places he'd recommend I go to if he decides it's not MG. When asked what it could be if not MG, he puffed up and variously spouted things like, "I'M just a consultant" (since first mentioned neurologist sent me to him for diagnosis) and "Well, this IS the MG research center" (meaning for MG only, and ONLY MG, nothing else.) I still have to fight the LRP4 test through my stupid insurance before I can get it done, and I haven't even started. Fancy neurologist is a jack*ss of extreme magnitudes, and I'm not going back to him. (you had to be there. Unreal. not worth the effort of another trip, let alone I'm not letting him make more money off me for doing nothing.)

Besides, I never test positive for anything. never. No matter how many symptoms, no matter how well it fits, nothing ever shows up in my blood. Never. According to my tests, I'm healthy as a horse. If only that damn horse would quit kicking me so hard....

In five years, last kid will be out of college and I'll be able to save up to go to the Mayo Clinic or the Cleveland Clinic and have them figure me out. In one year, we will be relocating 700 miles away because of hubby's job, and maybe there will be decent doctors there. Can't be any worse.....

Eye doctors here are mostly good. Going to miss them when we move.
Had glaucoma surgery on one eye in February, still on steroid eye drops because I have this insane tendency to scar, and scar tissue will destroy the glaucoma surgery. Doc said this past month that finally the scarring is decreasing. Come back in three months, still use the steroid drops. Oh, and you are getting a cataract in that eye that you should consider getting done in the next year. No kidding, six months plus of steroid drops will do that to you. But cataracts make cloudy, duller vision, and are easily handled with simple surgery. Glaucoma makes the lights go out, permanent blindness, permanent blackness, so....an accelerated cataract is just fine with me.

Will remember to call eye doctors (not sure which one will handle this, specialists are SO picky) in the morning. But several hours of complete rest by taping it shut worked wonders on the muscle soreness. So, probably I'm just fine. Fine and dandy, that's me. I got no problems. Except my attitude. I'm told I have a really bad attitude towards doctors. I tell them that's that how I get by, living on my really bad attitude. They don't quite know what to make of that...

I'm sorry if you've already been round and round this block, but have you explored the possibility of Ehlers-Danlos and POTS? I don't know whether there is a correlation between those two, but I have heard them connected with each other before--and also with MG or MG-like symptoms. When you said dizziness and balance issues, and then mentioned self-spraining joints in the next breath, that's where my mind went.

Abby