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Timing is of the Essence: A Story of Misdiagnosis and the Need for Quick action

My name is Andrea Mitchell and this is my MOG Antibody Disease story. I am a patient ambassador for UCB and the Director of Blind Resources for The MOG Project.  MOG Antibody Disease (MOG-AD) is a neurological, immune-mediated disorder in which there is inflammation in the optic nerve, spinal cord and/or brain.  Myelin oligodendrocyte glycoprotein (MOG) is a protein that is located on the surface of myelin sheaths in the central nervous system. 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 trip to Cabo San Lucas in Mexico. I had to take antibiotics for 3 months. The C-diff infection hit me hard as I was training a new hire class in Minnesota and I remember almost passing out while I was trying to instruct the class. I had tears rolling down my face and left to go to the nearest hospital for treatment. I was given IV fluids and testing to see what was going on.  After the discovery of C-diff along with parasites and amoebas, I was sent home with various medications. My supervisor recommended that I return home and work out of my home office location.

I vividly recall a few days before my first MOG attack, a green light flashed across my field of vision and everything went black for about a minute. I went to lay down and did not think much of it as my vision fully returned.  Looking back, I believe it was a foreshadowing on what was about to happen.

I woke up on October 1st, 2011 and I had a horrible migraine with intense eye pain and blurriness in my left eye. I do not know how but I drove to my job as an instructor for Comcast, which was 25 miles away in Livermore, California. I just thought that I was having a migraine with aura. When I sat at my desk to sign into my computer, I could not see enough to sign into it. I immediately called my medical provider and was advised that it may just be a migraine affecting my vision. They informed me to get some rest and call in the morning if it did not get better. I called my supervisor and advised her of the situation and went home for the day.

Andrea and Newcastle

I remember feeling a little scared but had no idea what I was about to learn. That was the last day that I worked at Comcast.

I did not get better in the morning, and everything was black with total darkness in my left eye. I was then given an emergency appointment with an ophthalmologist in Walnut Creek, Ca. He noticed that my optic nerve was swollen in my left eye and that was causing the blindness. I could tell by his expression that something was really wrong. He sent me to the emergency room where they admitted me into the hospital immediately. The doctor came in and explained that after running a series of tests, that my MRI showed enhancements in my left optic nerve. I was given IV steroids and discharged that evening. I was given four days of liquid steroids and a referral to a neurologist. The steroids did not work and I was still blind in my left eye. The neurologist that I was referred to was genuinely concerned about what was going on. He did some more blood tests and a spinal tap. He also referred me to a neuro-ophthalmologist located in Redwood City, California. The neuro-ophthalmologist did a thorough work up, 25 vials of blood tests, and everything came back normal including my spinal tap. I was tested for cat scratch fever, lyme disease, sarcoidosis and HIV. It was not standard practice to do a MOG antibody test in 2011 so that was the one test that was missed. I was his first patient with MOG and today he has over a dozen of MOG patients.

He first put me on 60 milligrams of steroids. Within 2 weeks, I woke up completely blind in both eyes. I was terrified. We tried 1,000 grams of IV steroids for 3 days. I did not get any of my sight back. He then suggested plasma exchange (PLEX). I was admitted into the hospital for two weeks and I had seven plasma exchange sessions with a break in between. 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 within the first two years of trying to find a diagnosis. I was relapsing every 6 months. I have had multiple life-threatening blood clots after receiving six separate plasma exchange treatments. I had deep vein thrombosis and pulmonary embolisms. The treatments almost cost me my life and I will only use plasma exchange as a last resort for future treatment options. I was on blood thinners for five years and I was taken off them as I was reevaluated, and it was determined that my blood clots may have been a result from my catheters for the plasma exchange treatments.

Andrea and James at the Guthy-Jackson Conference with Newcastle
Andrea wearing her MOG awareness ribbon

I was determined to find answers. How could I be legally blind without any explanation? Over the last ten years, I have seen doctors at Kaiser, Stanford, Mayo Clinic and UCSF. I currently have a consulting doctor who is an expert in the field, from Massachusetts General Hospital. 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, UK. I finally received some answers. My test came back positive. Before getting the correct diagnosis, I was told that I had CRION, which is Chronic Relapsing Inflammatory Optic Neuritis.

I was on 60 to 90 milligrams of steroids for 5 years straight and gained 100 Lbs. I was even informed by a doctor that steroids do not have calories. I went into menopause the first year of taking steroids. It took two 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 begged to differ, as I became legally blind in both of my eyes. I had a dozen optic neuritis relapses. I had to be my own advocate and insist on seeing other doctors in order to find one that understands this condition.

I tried intravenous immunoglobulin (IVIG) as a preventative medication but had to stop as I was getting extremely sick. I had horrible migraines, nausea and vomiting from it. I had aseptic meningitis a few times and found out that I was getting too much and was not being dosed by my ideal body weight. That caused me to have extremely high blood pressure and a fast heart rate. I then switched to a common rheumatoid arthritis medication and stayed stable for 3 years. However, I woke up with noticeable hearing loss in 2016. This was confirmed by an ENT doctor along with my neurologist to be relapse-related by blood work and MRI of the inner ear canal. Thankfully, after a taper of steroids, I was able to get most of my hearing back. Unfortunately, a relapse struck again the following year. I was quick in getting a hearing test along with a MRI of the inner ear canal to confirm what was going on. I regained most of my hearing back from a taper of steroids but have some residual hearing loss from both relapses.

It was discovered that I have a neurogenic bladder by a urologist as I have sudden urges, frequency, retention and have to get into certain positions in order to empty my bladder. I have unexplained electrical shocks randomly all over my body, pain throughout my body and what I refer to as “MOG fog”. It is like something affecting my concentration and memory. I just cannot think clearly. It is sometimes disabling. Especially when trying to learn new things.

I often wonder if I might not be legally blind today if the MOG antibody test had existed, when I had my first attack or if my doctors treated my relapses aggressively enough or if doctors were aware of the MOG antibody disease back in 2011.

I have thankfully been relapse free for almost 3 years now as I am on immune suppression medication. I give myself subcutaneous injections every week. It can be challenging being immune suppressed, but I try to enjoy myself as much as possible with safety measures in place. I have also lost 60 lbs.

I attended a blind school in Albany California and received a beautiful guide dog from Guide Dogs for the Blind in San Rafael, California. His name is Indy and he is a gorgeous yellow lab with caramel tones in his ears and tail. He also has a white pattern along his shoulders which I refer to as his angel wings. I received him On October 1, 2021 and he does outstanding guide work. He was raised in San Jose, California. We have a loving retired guide dog named Newcastle. He is also a yellow lab and now goes to work with my husband James. Thankfully, James works from home remotely. Newcastle has guided me for seven amazing years. We have a 14-year-old Pekingese named Bubba and he rules the house. 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. I went blind after 2 years of being married and we went through household adjustments as I could no longer work. I was the bread winner in the household before becoming blind. We lived in Discovery Bay, California and relocated to Oakley, California. I was told by somebody at the blind school that 75% of couples break up after someone goes blind. I am extremely fortunate to have such a loving and caring husband. We enjoy music, traveling and walking along the beach. He is my rock. We go to the Guthy-Jackson Charitable Foundation medical conferences every year in hopes of finding new discoveries.

I am so blessed to work with an amazing group of people at The MOG Project. I am an executive board member and Director of Blind Resources. I joined the group so that I could help others with their MOG Antibody-Associated Disease diagnosis. My hopes are to inform, educate, promote advocacy, support and provide awareness of all of the resources that are available. 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, do not 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 time is of the essence.

By Andrea Mitchell, Director of Blind Resources

1 thought on “Timing is of the Essence: A Story of Misdiagnosis and the Need for Quick action”

  1. Thank you for sharing your story. This is all new to me!
    I just received my results on Wednesday.
    I was positive for MOG. I am in research/educate-mode! I have another MRI on Sunday 10/04 and we are making a treatment plan.
    Again, thank you for sharing.

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Massachusetts General Hospital
Harvard University

Michael Levy, MD, PhD

Dr. Levy is an Associate Professor in Neurology who was recently recruited to lead the new Neuroimmunology Division at the Massachusetts General Hospital. His mission is to build a combined clinical and research neuroimmunology program to develop therapies for patients with autoimmune diseases of the central nervous system. Dr. Levy moved from Baltimore, MD, where he was one of the faculty at Johns Hopkins University since 2009 and Director of the Neuromyelitis Optica Clinic.

Clinically, Dr. Levy specializes in taking care of children and adults with rare neuroimmunological diseases including neuromyelitis optica, transverse myelitis, MOG antibody disease and acute disseminated encephalomyelitis. In addition to four monthly clinics, Dr. Levy is the principal investigator on several clinical studies and drug trials for these conditions.

In the laboratory, Dr. Levy’s research focuses on four main areas:
1. Development of animal models of neuromyelitis optica (NMO) with the goal of tolerization as a sustainable long term treatment: His team generated a mouse model of NMO based on pathogenic T cells reactive against the aquaporin-4 water channel. Now, they are using this mouse model to create a tolerization therapy to desensitize the immune response to aquaporin-4.
2. Genetic basis of transverse myelitis: His team discovered a genetic mutation in VPS37a found in a group of patients with a familial form of transverse myelitis (TM). To understand how this gene is involved in this immune process, they generated a mouse model with this mutation.
3. The immunopathogenesis of MOG antibody disease: This may depend on a subset of T cells called gamma/delta T cells. These specialize T cells react to MOG in mouse models and attack the central nervous system. In addition to understanding why and how these T cells are involved in MOG antibody disease, they are developing a treatment to target these cells.
4. Biomarker assays for other autoimmune diseases of the central nervous system: They are developing assays that detect autoreactive T cells in NMO and MOG antibody disease. In parallel, they are screening for novel antibodies to glial cells in related disorders such as encephalitis and optic neuritis.