After 42 years, I finally have a name

by Amy Osvold
NDVS/SB Vision Rehabilitation Specialist

Amy wrote the following reflection for the North Dakota Association of the Blind's newsletter, the Promoter. In order for more people to hear her important message, she is also sharing it with the NDVS/SB community.

My vision loss journey began when I was 4½ years old. I had been sick with what my mom thought was the flu. I stayed home in the morning with my grandmother while my mother worked. That afternoon she picked me up to go to the doctor but when she asked me to put on my shoes, I could not find them. I could not see them. She rushed me to a family friend who was an optometrist in Minot who then sent me to the ER. And thus began my journey.

Over the next 42 years, I began a quest to try and figure out what was causing my vision loss before I lost the rest of my sight or the mystery disease expanded its grasp to other areas of my body. As a child, I had a total of six attacks. After the fourth, I was put on an immune suppressant called Imuran as a kind of a shot-in-the-dark. It did not stop the attacks, but it did slow them down and kept the losses from being so extensive.

As an adult, I have seen countless neurologists, ophthalmologists, neur-ophthalmologists, rheumatologists, immunologists, and general practitioners in an attempt to find an answer before the clock ran out. Every time I had an attack, I lost more vision. I would take massive amounts of steroids but never regained what I lost. In 2000, I started having numbness and weakness on my right side, as well as dizziness, headaches, and nausea. The doctors just told me they could not find anything wrong other than the Optic Neuritis which had progressed to Optic Atrophy. By the late 2000s, pain became a constant companion. Every time I saw a new doctor and they ran the usual gauntlet of tests, I prayed this would be the time science had caught up to my disease, the time I finally had a name for the pain.

During the 2010s, I had attacks every 18 to 24 months. High-dosed IV steroids became my friend and my enemy. The pain would stop for a time but a cold, the flu, a cold sore, anything that affected my immune system would wind the disease up again.

During one of the treatments in 2018, I fell asleep around 11:15 pm and woke up around 1:15 am. I told my husband, Brian, that I needed to go to Starbucks on our way to work. He told me we did not have time. I begged again and he said no. Then Angry Amy came out and I began to scream about not sleeping and needing caffeine. I realized what I was doing and began to cry. Not just a few tears, this was a full-body, shaking sob. Brian turned around and went to Starbucks. My caffeine needs were met but I realized that I was becoming a monster. That was the last time I did the IV steroid treatments. At this time, I had been in the Vision Rehabilitation field for almost 20 years. While I did not like the idea of letting my vision go, I knew that I would be okay because of what I did for a living.

In 2022, I got COVID and noticed some vision loss but accommodated and moved on. The other symptoms such as numbness, weakness, dizziness, and pain were worse, but there was nothing that could be done for it.

I started catching up on some of my vaccines including COVID, flu, pneumonia, and shingles this winter, with a final shingles shot in late February. A few days later Brian and I came down with a bad case of the stomach flu. I got over it, but the dizziness was considerably worse. The pain was excruciating, and my vision was not right. On April 8^th, I started to have issues with my bladder. Two days later I fell three times within 24 hours. In the final fall, I hit my head on the car parked next to us. It was time to go to the ER.There, they discovered a very large lesion on my thalamus and white matter.

Fortunately, Trinity in Minot consults with Mayo Clinic in Rochester, MN. The doctors at Mayo requested a test for Myelin Oligodendrocyte Glycoprotein antibody disease or MOGAD. MOGAD, or MOG, is an inflammatory neurological condition of the central nervous system. It is very rare. I was told by a MOGAD researcher at Mayo that right now the prevalence is 1 in 10 million. However, now that they can test for it, more people are being diagnosed. MOGAD was discovered in 2007 but has only been able to be tested since 2017. MOGAD affects the top part of the myelin sheath. The myelin sheath is the protective covering of nerves. It has some symptoms similar to Multiple Sclerosis and Neuromyelitis Optica (NMO). However, unlike MS, MOGAD often affects both eyes with Optic Neuritis. It is found in people of all ages. MOGAD can be a one-time occurrence, or it can be relapsing like mine.

Ironically, the immune suppressant I have been on is one of the treatments for MOGAD. However, because I continued to decline on the medication, I needed a different treatment. The condition is so new that there are no FDA-approved medications. I did relent and do another course of IV and pill prednisone. I also had Plasma Exchange (PLEx) where they remove your plasma, give you back the other parts of your blood and donor/artificial plasma. I felt really good after the treatments. I have since started a weekly injection of another biologic in the hopes to keep things at bay.

Why am I telling you all of this? First, MOGAD is a new and often overlooked condition. Doctors and patients need to know about this condition and how to test for it. Second, and more importantly, even when you feel that there is not more hope, there still may be a light in the darkness. I asked the doctor at Mayo if anyone else has had it as long as me. He took my breath away when he told me that he does not know of anyone because they have probably passed away because this is serious. That shook me to the core. The physical toll has been terrible, but the emotional toll has been devastating. I asked three different hospitals to speak to a therapist, but it wasn't until I got home and asked my general practitioner that a referral was made. This is my final call to action. Our mental health struggles associated with vision loss, or just regular life circumstances that are more complicated by vision loss, are not something that can be overlooked or ignored. It is a part of us. It is a part of our journey. And it is nothing to be ashamed of.

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