Now that I have been diagnosed with Myelin Oligodendrocyte Glycoprotein Antibody Disease, or MOG-AD, I have met others who are afflicted and have listened to their stories. They all start similarly, with an acute attack, out of the blue, and always marking the start of an unexpected turn in health. My story is different. I experienced unexplained chronic fatigue and a slight dimming of vision: a little peek of what was to come.
Almost 19 years ago at the point of writing this story, I was a young mother, with a wonderful husband and 2 beautiful little girls. By all rights I was in the happiest part of motherhood. I had a good life with my family and I had plenty of energy. I don’t really remember how or exactly when it came on, but I started to notice that I was feeling very fatigued, shaky and weak, especially when exerting myself. I had labored breathing at times and I felt like my legs weighed a million pounds. It is hard to describe, but it seemed like if I stopped struggling to breath, my body would just stop breathing naturally.
Hi Julia, I am really happy that you and your daughter started this project. My situation is very similar to yours but it effected my walking more than my vision. I wish there was some way the test for the MOG Antibody could be done prior to an attack, i.e., as a means of prevention, so as to avoid damage. I had symptoms for 15 years prior to the attack that landed me in the hospital paralyzed from the chest down. I even saw a neurologist at that time because my optometrist noticed a pallor on my optic nerve head. The neurologist told me to come back when I develop “real” symptoms, but I needed a referral from my family doctor who dismissed my concerns outright. I changed doctors 3 times and was still treated like I was making up stories. I wish my children and grandchildren could be tested for the MOG Antibody. I worry that they might have an attack one day that could have been prevented.
I have suffered from MOG for almost two years now! I feel the same way you did as far as energy and feeling like I was going to fall all the time due to extreme weakness! Mine affects my walking and spine more then my vision. I sometimes have these blurry periods and somewhat of a hard time seeing. My bladder and bowels have been affected due to this illness too! I wish they had more resources and knowledge about this awful debilitating auto immune disease! I keep pushing through life and only hope things turn around and get better for me.
Hi my name is Erin and I was diagnosed with MOG two years ago at the Mayo. I started with a headache that would not quit. I saw a doctor thinking maybe it was an ear infection, nope, i saw a dentist thinking it was my teeth, nope, so for days I took tylenol, suffered, tried to sleep, could not eat,
My daughter who had been on vacation, came over and as I sat on the couch with the grandkids tipped right over…I laughed because it was so ridiculous, convinced my daughter I would be fine, she left but turned around and out of concern gave me an ultimatum. She was bringing me to the ER or calling 911…I was admitted for a week and had many many tests, at one point they treated me for meningitis while waiting for the tests results to come back. That was not it, so they sent me to Mayo where after a week of tests, spinal, MRIs I as diagnosed. I was given intravenous steroids for a week then high dose steroids (60mg). The headaches did become less severe…but I could not walk without help. I had a friend stay with me for about two months and my memory was gone. My MRI showed my entire head was covered with inflammation, I was given an antidepressant…that really messed me up… my daughter was so scared she brought me to the ER…lol…I wasn’t depressed at all, then or now, I’ve always been pretty upbeat….then we tried cellcept which really upset my stomach so after several improved MRIs, steroids, we decided to see if we got it, I relapsed within two months of tapering off the steroids although I’m thinking it just didn’t go away, I was improved but far from better, we saw the relapse on the MRI which showed an area of inflammation on my brain again, smaller but new. I started IVIG monthly about 7 months ago. The plan is to end the treatment in July. Today I am still a bit unbalanced, unable to drive, weaker than I use to be, but functioning very well compared to the past couple years! Yay!! I have tried physical therapy a couple times, however I struggled so much and its not a type of thing some physical therapy could change, it seems I improve in tiny micro steps Very hard to explain, I also went through a few months of shortness of breath which was a bit scary, bowel and urination issues for awhile, back pain, and now mild headaches pretty regularly. I am super hopeful tho. I wish there was some reason to this, how did I get it? I’ve been healthy all my life and was tested for every single possible thing…My expectation is full recovery!! Its so good to read this blog and know I’m not alone, I am still the only MOG patient my neurologist has had. I live about 5 hours from Mayo in a smaller town in Northern Minnesota. My neurologist and I are learning as we go. I would love to hear how everyone is doing, Take care and sll will be well!!