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...
Oh, do I feel for you.The EMGs are so painful. I
Having that MG performed on your facial area WAS excruciating pain. If there was another word besides excruciating I would use it, lol. I hope you went home and ate a great, big Blizzard or some other wonderful ice cream treat in hopes of seretonin release. NOTE: WE DO HAVE TO BE CAREFUL NOT TO OVER INDULGE. But sometimes it's called for.
I had an EMG on my neck/back area. I was in tears by the end of it and the test was inconclusive. When I got home the pain had intensified. I don't know if it aggravated my fibromyalgia or it was due to the EMG in whole.
It is so difficult for the doctors to understand what we go through regarding anxiety, depression and pain related to some diagnostic studies. We just want to have an answer to why we experience difficulty with holding our head up, walking, chewing, swallowing, double vision, urinary changes or managing activities of daily living and socializing. The fatigue that comes with MG can be overwhelming at times. Learning your strengths and limitations is helpful. Some days are better than others. I have found warm moist heat, red light exposure, massage and stretching (lightly) to be beneficial for me. But in the end; every day has it's challenges. Learning good coping mechanisms, health habits and knowledge of MG is helpful. This site and the contributors are always here with inspirational and beneficial knowledge. My last comment and I know many of you are thinking oh thank goodness, lol, is "never give up on yourself. We are the group of people that understand where your coming from. I'm sending hugs and good vibes to all of you. Go out and catch a lightning bug then let it go. It will make you smile."My last message was really for Susan (plus all the members of MG. COM).
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.
