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Doctor: I am going to teach you about MOGAD.
Student: What does it stand for?
Doctor: *fast* Myelin Oligodendrocyte Glycoprotein Antibody Disease.
Students: *nervous laughter*
Doctor: As I said, MOGAD.
MOGAD: The Rare Disease We Need to Talk About.
Science and Technology Magazine to Explore Your Passion
Who Are You? What Is MOG? (cont)
Well, It's been a busy couple weeks. Starting March 1st I have to be out of my childhood home, and am trying to hurry up and close on another mobile home so we can have a place to live. Anyways, I have dealt with swelling on my optic nerves (the part of your brain that connects to your eyes) to the point where both of mine are mostly dead. As scary as it sounds, I'm so used to things going wrong, I just keep going. Which has gotten me into trouble. Like I have NO peripheral vision, so I run into things with my shoulders a lot. I have run into so many things and people are always just like "OMG ARE YOU OKAY?" Yeah bro. Just pretend it didn't happen, I'm fine. Please ignore the fact I have the sight of a mole. Which is why you will never see me behind the wheel again. So MOG symptoms? What does this cause? It causes blindness, headaches, brain fog, and other nerve problems. Along with my other diseases, it just makes every day a symptom party. Feel free to send in asks about MOG, and I'll answer to the best of my abilities.
To be honest, I'm still afraid to get my infusion each week.
“It is my bad luck that this has happened to me.' No, you should rather say: 'It is my good luck that, although this has happened to me, I can bear it without pain, neither crushed by the present nor fearful of the future.' Because such a thing could have happened to any man, but not every man could have borne it without pain. So why see more misfortune in the event than good fortune in your ability to bear it?”
- Marcus Aurelius
“I have never been sorry for the doctor's initial misdiagnosis, however. For almost a week, until the negative results of the tests were in, I thought that I was going to die right away. Every day for the past nearly ten years, then, has been a kind of gift. I accept all gifts.”
- On Being a Cripple by Nancy Mairs
I hope people around me the last few years have understood that taking such long-term and high doses of prednisone has greatly changed my moods and affects. I've gone through such strange manic and depressive and angered and panicked periods that I never truly experienced before. I am glad to be tapering off for good hopefully so I can return to a sense of normalcy in character.
First day getting my clinical trial drug went well! I've been at the hospital from 8 until half 5, but no bad side effects. Hopefully this is the drug and not a placebo 🤞
