Timing is of the Essence: A Mayo Diagnosis

My name is Andrea Mitchell and this is my MOG story. I am hoping to help other people going through this condition understand the importance of getting immediate treatment when having a relapse. I was 45 years old, when I had a clostridium difficile infection and amoebas after my husband and I returned from our Cabo trip. I had to take antibiotics for 3 months. I woke up on October 1,2011 and had a horrible migraine and pain in my left eye. I saw an ophthalmologist the next day. He noticed that my optic nerve was swollen in my left eye and that was causing the blurriness. I could tell by his expression that something was wrong. He sent me to the emergency room where they admitted me into the hospital. The doctor came in and explained that after running a series of test, that my MRI showed enhancements in my left optic nerve. I was given IV steroids and discharged. They gave me 4 days of liquid prednisone and a referral to a neurologist. The steroids didn’t work.
Andrea and Newcastle
The neurologist was very concerned about what was going on. He did some more blood tests and a spinal tap. He also referred me to a neuro-ophthalmologist.  The neuro-ophthalmologist did more blood tests and everything came back normal including my spinal tap. It was not standard practice to do a MOG antibody test. I was his first patient with this disease and today he has 8 patients. He first put me on 60 milligrams of prednisone. Within 2 weeks I woke up completely blind in both eyes. I was so scared. We tried 1,000 grams of IV steroids for 3 days. I didn’t get any of my sight back. He then suggested plasma exchange (PLEX). I did get a good amount of sight back in my right eye. It was at 20/50. My left eye remained blind. Since my relapses were not under control, I lost the majority of sight in my right eye.  
I was determined in finding answers. Over the last 7 years, I have seen doctors at Kaiser, Stanford, Mayo and UCSF.  The best suggestion that I received was from my doctor at UCSF to get the MOG antibody test in 2013. My doctor had to fight to get that test but he was finally able to send my blood sample to Oxford.  I finally got some answers. My test came back positive.  Before getting the correct diagnosis, multiple times I had been misdiagnosed by the Mayo clinic as I was told that I had CRION, which is Chronic Relapsing Inflammatory Optic Neuritis. I was on 60 to 90 mgs of prednisone for 5 years straight and gained 100 lbs. I went into menopause the first year of taking steroids. It took 2 years for my diagnosis and that time might have cost me my sight. I was often hearing things like, “Let’s wait and see what happens.” Some doctors insisted that having MOG Antibody-Associated disease was not as devastating as Aquaporin-4 positive NMO, and that the recovery was much better. I beg to differ as I am legally blind. I had to be my own advocate and insist in seeing other doctors in order to find one that understands this condition. 
Andrea and James at the Guthy-Jackson Conference with Newcastle
Andrea wearing her MOG awareness ribbon
I tried IVIG as a preventative but had to stop as I was getting very sick. I got horrible migraines, nausea and vomiting from it. I then switched to Methyltrexate and have been stable for quite a while months. I have also had no luck with Rituxan, Cellcept and Imuran. Also, I have had 2 episodes of hearing loss. This was confirmed to be relapse related by blood work and MRI of the inner ear canal. I often wonder if I might not be legally blind today if the MOG antibody test existed or if doctors were aware of it back then. I have attended a blind school and received a beautiful guide dog named Newcastle. All of this has helped me remain independent. I had to learn how to walk, cook, use adaptive technology, acquire daily living skills and use a computer. Being blind is not easy but you can adapt with the right training.  I have a wonderful and supportive husband who has remained by my side from the beginning. We go to the Guthy-Jackson Charitable Foundation medical conferences every year in hopes of finding out new discoveries. I am now part of The MOG Project and a support group leader with the Siegel Rare Neuroimmune Association (SRNA). I joined the group so that I can help others with their MOG diagnosis. My hopes are to inform, educate, promote advocacy, support and provide awareness of all of the resources that are available. I also hope to provide some ideas on how to make The MOG Project websites as patient-friendly as possible. I look forward to helping as many people as I can. The best advice that I can offer is to never stop searching for answers, even when you feel like it is going nowhere. Keep yourself up to speed on the information that is available.  If you have optic neuritis, transverse myelitis, or any other related symptom, don’t be afraid to ask for the MOG Antibody test to be included with the other tests. It may save you from having severe disability. Remember that timing is of the essence.

By Andrea Mitchell