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Occular MG -- flare up first sign?
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Hi all,
I'm almost through my first year after being diagnosed with doubly sero-neg, sfemg negative MG. Ice sign and edrophonium tests both positive. Mestinon does nothing for me --other than give a few tiny tingles in the limbs. Contrast-enhanced neuro-mr was normal. The only symptoms I've noticed are restricted to ptosis and diplopia (mostly torsional diplopia). Normally prednisone every other day keeps symptoms at bay. Moreover, the age demographic is atypical (40's maie). Fortunately my my neuro and gp are quite willing to admit that there are people that are atypical even for MG. I'd be less inclined to think it a immune malfunction or the nmj if the tensilon test were not strikingly positive and prednisone didn't help most of the time. Stress is a known trigger and I'm always working on that. Recently, however, I started a flare up but I don't think stress was the trigger. The reason I write is this: at the beginning of the flare I felt like I had sand in my eyes for a few hours -- anyone else have this as a proverbial canary in the coal mine? I realize my ocular-only symptoms are kid stuff compared to many on the list, but I'm wondering if other's have observed gritty-eyes as a warning sign. Posted on 08/03/12, 03:34 pm |
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Hiya RanDumbGuy (love the name!)
I've had some pretty bad ptosis and diplopia since my dx, but never discomfort in my eyes. I wonder if you could have gotten something (chemical or environmental) in your eyes that triggered symptoms, though? Disclaimer: I've only had MG for a few months, so hopefully others will pipe up who've been on this road longer than me. 
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One thing that happens with ocular MG is that you do not blink as often during the day and you may not close your eyes completely at night. This not only gives you a dry eye, but a gritty feeling. I had actual corneal changes from dry eyes (before diagnosis). If this is the cause, your eyes may be red as well.
My ophthalmologist said to use saline drops (artificial tears) like lip balm. I put bottles all around the house so I could find them easily and therefore use them more often. There are stronger drops you can use for nighttime dryness. Ideally your MG would be under sufficient control that it would be unnecessary. One thing I discovered as I got better was that my eyelashes and eyebrows grew back in. I was holding my eyes closed with my fists. b.
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Oh Bee, I am so sorry. That makes me feel so bad for you. You always are so strong and don't complain that hearing that reminds me of just how much you and others have suffered. So sorry. I am glad your doing better. I hope you didn't get too worn out while your hubby was ill. That does me in when I worry.
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Hugs carla,
The worst was going undiagnosed and you have experienced that big time. I am doing much better MG wise and we are both recovering from the surgery--I even snuck out and had lunch with friends and MG was definitely on the back burner. love, b.
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Dry eye has been problematic for me over the years. My opthemologist explained the issue to me exactly as b states here. I've always leaned on the side of "natural" remedies but am now cautious about everything. The over the counter eye drops have worked well when I remember to use them. Years ago I took an herbal preparation containing "eyebright" which made a huge difference. I recently decided to try it again....very cautiously....and it seems to be working very well for me. No sandy eye.
I'm reluctant to recommend anything; as we all know what works for one may be an issue for another. Best of luck RanDG. Larissa
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Larissa, thanks for the wisdom. The sandy-eye feeling only lasted about 4 hours and gave way to torsional diplopia. Once the diplopia set in, the sandy-eyed feeling went away. It was weird.
As to Binia's speculation about chemical/environmental trigger -- who knows, there wasn't really anything different about the day but you can't monitor everything. For example, it would be impossible to rule out having caught some pesticide drift. On the upside, I'm starting to notice a little bit response to when I concentrate to resolve the diplopia. Thanks to all for the thoughtful responses. Enjoyable weekend to all.
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