My weird case started in September 2020 when I had a high fever of 102 with no other symptoms. The fever continued for 30 days, went as high as 104 and never below 100 unless I took medication. The infectious disease specialist was stumped and other than a fast heart rate, slightly elevated rheumatoid factor, and elevated inflammation markers, all other tests were normal. The doctors ordered imaging thinking it must be cancer which was thankfully not the case. So, I went to my acupuncturist who is also strong in herbal medicine and used a custom formula to help fight whatever was going on and to bring down my fever. In 3 days, the fever was down and never returned.
I went about my life and scheduled a routine eye appointment with an optometrist for new reading glasses. Because of the pandemic, I was working at home most of the time and had not had new lenses in over 2 years. When I scheduled the appointment, I had no idea I was in the process of losing my vision.
Two nights before my vision appointment, I was watching TV late at night with captions so I wouldn’t disturb my family. I was rubbing my right eye and reading the words with my left when I realized one of the words on the screen was very smudged looking. With both eyes open, I had no idea there was an issue – I dismissed it as eye fatigue.
During the vision exam, the optometrist put an Amsler grid in front of me. This is like graph paper and is used to help determine if someone may have macular degeneration or other eye conditions that can cause lines to be wavy, distorted or missing. My right eye was fine. My left eye had an 8 square section that was completely blacked out. I told the doctor what I saw and she was very alarmed! I outlined what was dark for her, then she held up a red object and had me cover my left eye first – bright red. Cover my right eye, my left eye was definitely dimmed compared to my right.
The optometrist jumped into action and called a local ophthalmologist and explained that her patient MUST be seen in the next 24 hours.
The ophthalmologist determined I had optic neuritis – as many of us do at diagnosis. Except unlike most, I did not have any eye pain, only minor vision abnormalities. But he was puzzled – he explained the part of the nerve that was swollen did not follow many of the common diseases or conditions he would see. I was immediately referred to a university hospital and a neuro-ophthalmologist to determine the cause.
The university hospital expert was thankfully familiar with NMO and MOGAD and sent in the test. I asked for a list of all the tests she was doing and I read up on NMO and MOGAD long before the results came back. I actually laughed out loud that they were wasting my money on these tests since I didn’t have any of the criteria other than optic neuritis.
Little did I know that 3 weeks later, the diagnosis would come back as MOG antibody positive.
That was a little over 2 years ago. I’ve since had a transverse myelitis attack which caused some loss of sensation in my feet and legs as well. But overall, I’m living my life about 90% of normal. My vision is 20/20 with glasses and other than some balance issues and weakness in my legs – you’d never know anything was wrong. Three rounds of IV steroids and oral steroids for 19 out of the first 24 months plus 20+ side effects made me a wreck!
But I will say this: hate steroids all you want, but for most of us, they do the job and reverse much of the damage. For this, I am thankful for the steroids.
I’m sure many MOGAD warriors can relate to feeling like you have some PTSD – from the diagnosis, the treatments, the fear of what’s to come, and so much more. Just prior to the pandemic, I had setup a little art studio in an unused space of our home. I had grand ideas of selling my painting and crafts at festivals. Then, pandemic. But I really enjoyed creating! So, I started painting kindness rocks. I could get the creative juices out without the artwork stacking up in my home. I was scattering 10-20 rocks a week around my community and in a few months, had over 1000 Instagram followers. Since diagnosis, my rock painting has reduced, but has not ended. Instead, I find myself painting rocks to distract myself from the stress of the disease. Rock painting kept me sane when the steroids made me feel crazy. And even with an IV in one hand, I enjoy painting rocks for the nurses in the infusion center when I receive my monthly IVIG. I’m very thankful the treatments saved and restored my vision so I could continue my hobbies.
Last year, I also joined The MOG Project. This fantastic team helps create and spread information about our disease, treatments, and general knowledge to ensure people are always up to date. All for free, all volunteers like me. I am so thankful I stumbled on their Facebook page! Until MOGAD, I had no clue there were medical information/support groups on Facebook!
Today, I am thankful to be clinically stable for the last 11 months. I found my magic medicine that’s keeping me relapse-free and I have a good balance of keeping myself safe from illness while still having a social life. Air filters, open windows, and outdoor fun are the key for me! In addition to finding my stabilizing meds, I found a community of rare patients like myself. Each of us with our own special struggle and internal war. Some of us with disability requiring assistance from others, some of us living our lives in a pretty normal manner, even able to forget we’re “sick” from time to time! Some of us with occasional bouts of exhaustion followed by great energy.
MOGAD baffles our friends, families, and co-workers because much of the time, we look fine. But I see you my fellow warriors and I know that you’re literally fighting the fight of your life. And what I also know is that the scientists are working their magic for us right now. They’re studying drugs and treatments to try to stop this disease in its tracks. They’re finding ways to regenerate our damaged nerves so we can have reduced symptoms and pain. And because our disease is caused by an antibody that can be defined and seen, we are one of the lucky diseases that may have a cure ahead. Do not give up hope. And know that while we’re “rare”, we are a mighty group, ready to continue our battle. Fight on my friends!
By Dana Yates