Ocular myasthenia gravis
I was diagnosed with OMG today. My right eye is pretty much closed be the end of the day. I had an EMG on my face to diagnose it and it was Almost as painful as having a Baby! I'm looking for people without only OMG to talk to, to learn what's to come...
Hi Susan, I'am Bobby i have ocular mg. I started having double vision in 2022 a little while after taking the covid shot though it was contacts went back and forth to the eye doctor so finally had cataract surgery. This didn't help.In 2023 went to the beach while there my left went shut got back home and went to the ER there was told that I had mg.Before going to the beach I took the covid shot and she shot.Now I take pyriodstigmine 120.mg 4 times a day and cellcept which I've been on for 3 1/2 months,waiting to go on infusion. Hoping you do well
As a result of a closing left eye, which began in June 2024, I was diagnosed with MG in September. I was told I probably had undiagnosed gMG for several years due to fatigue and leg muscle weakness I had for all that time, and was gradually increasing by mid-2024. Prior to the MG diagnosis, I was given a complete cardio workup, all of which was normal. Here's my question for the group: Dryeye doesn't appear on any of the lists of side effects/symptoms associated with OMG. I am wondering if the chronic dryeye I have had since 2023 could be a side effect of the MG? It has progressed lately to the point where tears just roll out of my eyes. All dryeye treatments and drops that I have had over the past 2 years have been totally ineffective. I am considering the eye lid surgery as a last resort, but am concerned that also won't be effective if the tears are somehow related to OMG. Is there any basis for my thinking the dryeye could possibly be tied to the MG?
I'm sorry to hear about your struggles with both MG and chronic dry eye. Around 20 percent of people with MG also experience dry eyes. Here are some articles and a discussion that I think will be helpful: https://myasthenia-gravis.com/living/dry-eye-treatment, https://myasthenia-gravis.com/driving, https://myasthenia-gravis.com/forums/eye-sensations. And then some scientific studies you may want to check out: https://pmc.ncbi.nlm.nih.gov/articles/PMC3039188/ & https://karger.com/cop/article/11/2/322/78544/Ocular-Myasthenia-Gravis-with-Severe-Blepharitis.
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It’s great that you’re exploring all your options, including the possibility of surgery. Discussing your dry eye issues with your neurologist and an eye specialist with MG experience might be helpful. They could offer more insight into whether your dry eyes could be related to MG and suggest appropriate treatments or alternatives. It’s definitely important to address this before making any decisions about surgery.
Wishing you the best as you navigate this!
Jodi, Team Member
I was told by a neurologist in 2018 that I had MG. My only complaint was the double vision. I quit driving because of it. The antibody tests were negative and the EMG was inconclusive. He proscribed the Mestinon but I can take it, even one or two doses. It give me retriable diarrheic. I just used and eye patch to read.
I asked him several times if I had Parkinson's disease - he told me to quit reading google! We had to move in with one of our kids in another state. We are old!: 76. My new primary doc sent me to a neurologist who say me walking into the office and before I sat down he put me through and informed me that I have Parkinson's. He prescribed Sinemet and neurophysiology therapy. Two months later I couldn't believe the difference - that was in 2020.
However, he says that I have MG but it's ocular MG and wanted me to stay on the Mestinon. I told him 'no can do'. He referred me to aa ophthalmologist who specialized in vision problems for folks with MG, PD and MS. I got he reading glasses with the prisms. And I got an eye lid lift. That took care of the double vision!
If I had gotten a second opinion and a correct diagnosis I might still be living on the side of a mountain in northern Georgia in the house that we designed and loved. But you can't look and - you just have to thank the Lord that you sill alive to complain.
Dan JonesHey Dan! I hope this message finds you well. Wishing you a very Happy New Year filled with good health and joyful moments. If you feel like sharing any updates, we’d love to hear how things are going for you!
Take care, and all the best for the year ahead!
Jodi, Team Member
I just got done with the EMG.......OMG the needles in my temple made me yell. The one in my neck was bad enough. He started at my feet and worked his way up. 1 1/2 hour exam. Result was could be mg. What do you have to do to see the elephant in the living room.