Diagnosis: MOG Antibody Disease
Alabama, United States
June 2017 started like any other month. I was learning how to balance working full-time and being a new mom. My son was 5 months old and my husband was a month away from starting medical school. Life was good. I noticed a numbness/tingly feeling in my feet. It was easy to dismiss. I was sure it would go away eventually. Over the next two weeks, the feeling spread up my legs. A week later I noticed that my leg muscles felt weak and I started having trouble with my bladder. It was difficult to make myself urinate and I could not tell if my bladder was empty.
Finally, convinced that something was seriously wrong, I went to the Emergency Room (ER). Unfortunately, I was not taken seriously. I was still able to use my legs and could pass their basic neurology checks. I was sent home and told that my condition was “not an emergency,” to see my primary care doctor, and to come back if I “could no longer walk” or “couldn’t urinate for 6 hours.” I felt deflated and a little humiliated. I was scared that something was seriously wrong and didn’t know how to get help. I was able to get in to see a nurse practitioner later that day. She was completely baffled by my symptoms and said she would normally refer me to the ER. She did all she could to help, but I left there feeling lost.
Walking was becoming increasingly difficult and so was urinating. 24 hours after my initial ER visit, I collapsed onto the floor – my legs had given out. I could no longer walk without serious help/support because my legs were numb. When I went back to the ER the next morning, I was taken very seriously. At that point I was completely numb from the chest down, could not urinate, and was losing sensation in my hands. After an MRI and a consult with neurology, I was admitted to the hospital and told I had Transverse Myelitis. I was put on high dose IV steroids for 5 days. Several blood tests were run as well as tests on my cerebral spinal fluid (I had to get my head shaved for that one, it’s a long story). Everything came back normal.
After treatment, I spent a week in an in-hospital rehabilitation center. There, I learned how to cope with my numb legs and how to catheterize myself so I could urinate. After being home a few days, I noticed that the vision in my right eye was blurry. These symptoms were difficult to ignore and my husband convinced me to seek medical help. I could see little out of my right eye and could only see out of half of my left eye. I went back to the ER, and after another MRI, was diagnosed with Neuromyelitis Optica (NMO) and admitted to the hospital. On my previous hospital stay I had been tested for NMO, but I did not have the AQP4 antibody. I received another round of high dose IV steroids for 5 days.
After this treatment, I went home and started physical therapy. Slowly I was able to regain the feeling and sensation in my legs. My bladder control came back gradually and so did my vision. My neurologist was very concerned about the timing of my relapse. He strongly recommended that I start immune therapy. I considered, researched, and weighed my options. I decided to forgo treatment because of my successful recovery. Six months after my initial attack, I tested positive for Myelin Oligodendrocyte Glycoprotein (MOG) antibodies. My diagnosis was changed to MOG Antibody Disease.
I have continued to test positive for MOG antibodies and decided to start an autoimmune diet last year to manage my disease. I continue to see my neurologist every 6 months to have my level of MOG tested. I live with a little fear each day that some strange feeling in my body could be a relapse, but I have been extremely blessed. The quick onset and rapid worsening of my condition led to a quick diagnosis. I was able to be treated quickly and effectively. Today, the only traces of my attacks are some spots of reduced sensation on my right leg and right foot. Others are not so lucky and suffer lasting and sometimes severe effects from such attacks. My hope is that everyone, especially medical professionals, will become more informed about these types of diseases and their early symptoms. Even though they are rare, they can happen and produce life altering consequences. Recovery is much more successful when people are taken seriously, diagnosed appropriately, and treated quickly.
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