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...
I had the same test twice it is awful
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
Hi Bobby sorry I didn't reply sooner. I tried pyriodstigmine a cpl years ago with no help.
My doctor took me off it which take a long time. He then put me on mycrophenolate. It worked really well but doubled my liver level. All OMG meds effect the liver, unfortunately.
It's been about 9 months weaning down from it and I'm back to square one. I have another appt this month and hopefully they'll be a solution.
I feel selfish complaining about OMG because general is so much worse. My eye opens a little in the morning but without meds it's closed by noon.
I'd advise talking to your Dr to maybe try another medication.
I wish you well
Sue
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 also have problems with dry eye. Was searching what causes dry eye on google, it said usually it is meds that cause dry eye, and also searched prednisone which I have been on for 6 months, high dose,finally weaning off it, and was hopeful the dry eye would go away. Maybe not if it is connected to MG. Seems my neighbors my age are also getting dry eye. It seems about the same pIta as the double vision. Hi, I have gMG and in the beginning, about 1 1/2 years ago, I have Ptosis and then double vision. Both were "fixed" by taking Prednisone (20mg) daily. I later experienced tears pouring from my eyes, but this has gone away too. It was very annoying, and I had to constantly wipe the tears away. I also take Pyridostigmine and live in the southwest so it's hard to say what causes dry eyes since the climate is very dry here. The tear flooding (my term) stopped after a couple of months.
Now I'm taking Vyvgart Hytrulo injections and have finished my first course of 4 weekly injections. So far no improvement but that is expected. I can only take Pyridostigmine with food to prevent stomach pain.
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 Jones
Hey 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
