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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...

  1. 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

    1. 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.

      1. Hi Susan hope you are doing better. I have been living with OMG since I was in grade school. I am now 63 and living a near normal life. One of the key things with MG is learning when and how to take your medicine. I am not a doctor but for me there was a fine balance of too much Mestinon vs not enough. Too much made my eyes flicker so it can take a while for you to learn your needs. Your doctor should be supportive of this.
        I was misdiagnosed early on and had eye surgery and found prism lens helped me a lot to cut down on eye fatigue. You also want to learn to turn your head and not your eyes as this will help cut down on fatigue. If you have florescent lights replace them with LED. Florescent flickers at a rapid rate (120 cycles per second) which isn't usually noticed by people but it can cause your eyes to tire rapidly, cause headaches and more. I had a really hard time with this in school and work early on. I used to unscrew 2 or the 4 light tubes in my office and place colored paper under the others to cut down on fatigue.
        When I was in school, prior to being diagnosed, I used a sheet of black paper with a cut out space so I could see only two lines of my book while doing my homework. I got what I referred to as white outs otherwise. I could not even read a page without my eyes going double.
        Today sadly I am not a book reader but I read short articles for hours each day and rely heavily on visual education. As I mentioned I live a normal life. Normal to me. I do not let my illness slow me down at all but you must learn to relax your muscles. Sometimes close your eyes for 15 minutes and it is amazing how quickly you bounce back.
        Please reach out if you have any specific questions as we are here to help.

        1. Amazon Audible has replaced books for me.

      2. hello , how are you holding up with being newly diagnosed with MG? Are you able to open your right eye now? I got diagnosed to with MG at 17 and I'm 27 now. You have definitely came to right place to find people to talk to. We are an open community. Feel free to keep sharing and we will be here to respond and lift each other up. Best of luck. - Jazmin (team member)

        1. Hello Jazmin. I went to my neuro and he increased my Mestinon to 5 times a day. It is helping but it's still much heavier at the end of the day regardless. It's ok though. I recently saw my ophthalmologist and spoke with him about what I can do when I just can't keep my eye open. I told him I read about something called Eye Crutches! He hadn't heard of them but did some research. Last week I went in and he measured my eyes and I'm now waiting for my glasses to come back. I can't wait! I'll keep you posted on how they work.

        2. Eye crutches?? That's a new term for me too. I'll have to look that up...Now that I've looked up what those are, they sound really interesting. You have to let me know how those work out for you. - Jazmin (team member)

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