MOG Squad Highlights

Sophia’s Story: A Caregiver’s Journey

April 15, 2022 5 Comments

Like birthdays and anniversaries, November 12, 2017 will forever be a date etched in my memory. My daughter, Sophia had a fever and fell asleep onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. my husband. It was so sweet that I took a picture. Little did I know this picture would represent the start of a long journey for our family, her headaches, confusion, anger, our countless trips to doctors’ offices, the Emergency Room and eventually, hospitalization. For the first seven years of her life, Sophia was a happy and healthy little girl. After her fever that November day, she started experiencing debilitating headaches and changes to her personality. She would have angry outbursts and spontaneously start crying. She was confused and forgetful. In the weeks that followed, her symptoms were dismissed by doctors as a sinus infection or migraines. My husband and I knew it was something more and fought hard to get her the care she needed. She was hospitalized at one point and given anti-migraine medicine and steroidsA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths.. In adults, it is sometimes used in high doses for acuteThe severe and sudden onset of a disease process. attacks. In some adult patients, it may be used for 1-2 months after an acuteThe severe and sudden onset of a disease process. attack to avoid a rapid onset of relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flare by the myelin oligodendrocyte glycoproten antibody disease (MOGAD) community).. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acuteThe severe and sudden onset of a disease process. attack, but it is not recommended long-term due to the profound effects of chronic steroidsA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child's health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency) onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. a child’s health. Use of oral prednisoneA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child's health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency) as a maintenance therapy in relapsing pediatric MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid DependencyMay occur for MOGAD patients when tapering to a lower dose of steroids causing recurrance of symptoms and may cause a relapse of new disease activity.). In hindsight, she improved each time she was onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. steroidsA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths.. In adults, it is sometimes used in high doses for acuteThe severe and sudden onset of a disease process. attacks. In some adult patients, it may be used for 1-2 months after an acuteThe severe and sudden onset of a disease process. attack to avoid a rapid onset of relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flare by the myelin oligodendrocyte glycoproten antibody disease (MOGAD) community).. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acuteThe severe and sudden onset of a disease process. attack, but it is not recommended long-term due to the profound effects of chronic steroidsA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child's health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency) onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. a child’s health. Use of oral prednisoneA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child's health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency) as a maintenance therapy in relapsing pediatric MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid DependencyMay occur for MOGAD patients when tapering to a lower dose of steroids causing recurrance of symptoms and may cause a relapse of new disease activity.), but the effects were short-lived once her taper was finished. Sophia missed numerous days of school during this time. OnInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. a day she was going back, she had a massive absent seizureA sudden, temporary disturbance in brain activity that causes changes in behavior, movement, sensation, or consciousness in our living room. Her entire body froze, and her eyes became fixated onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. the ceiling. Somehow, I knew she was having a seizureA sudden, temporary disturbance in brain activity that causes changes in behavior, movement, sensation, or consciousness, but didn’t think to call 911. We carried her to the car and drove to the nearest hospital 10 minutes away. Watching our little girl seize in the ER while doctors frantically worked to stabilize her was terrifying. The sheets were soaked with blood from failed IVs. She seized off and onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. for what seemed like an eternity. As soon as she was stable, she was transported to a larger hospital. I realized the severity of the situation when the critical care team rode with us for the 20-minute ambulance trip. Sophia was in and out of consciousness for the next few days. An MRIA noninvasive imaging technique that uses strong magnetic fields to produce images of nearly any structure of the body. For MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , it is typically used with and without contrast to identify disease activity in the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve. confirmed encephalitisA disease in which inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. of brain tissue caused by an infection or an autoimmuneA disease in which the immune system incorrectly targets and attacks an individual's own healthy cells. response results in swelling and damage. When caused by an autoimmuneA disease in which the immune system incorrectly targets and attacks an individual's own healthy cells. disease, sometimes called Autoimmune EncephalitisEncephalitis caused by an immune attack on the brain (as opposed to viral encephalitis). Refer to encephalitis.., but they could not determine the cause. The head of the PICU sat us down and recommended we transfer to one of the teaching hospitals in the area. I will always be grateful to him for his candor about the complexity of her condition and his incredible empathy. We embarked onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. another ambulance ride, with the same critical care team, this time to

Entering the World of MOGAD

October 30, 2021 1 Comment

Jenny Khazen November 2014: An incorrect diagnosis sparks the beginning of a nightmare “Your peripheral vision is black, you have intolerable eye pain, a prolonged headache, an earache and you’re tired? Those are all symptoms of an ear infection called Otitis Media. Here are some ear drops!” In November 2014, at just 20 years old, I developed a respiratory tract infection after going through a period of stress and uncertainty and was given antibiotics to recover by my original General Practitioner (GP). A week and a half later, I woke up with a terrible headache at the front and the back of my head that just wouldn’t go away. As my symptoms began to intensify, I realised that I had to see a doctor immediately but understood that it wouldn’t be my original GP as he was closed at the time. After listening to my symptoms, he diagnosed me with an ear infection called Otitis Media. Utterly confused about the diagnosis, I decided to trial the ear drops. It had now been a week since my first onset of symptoms. I went to work at my local restaurant with poor vision and excruciating pain. After continuing to bump into everything that was in my way and not being able to see, my employer decided to cut my shift short. I entered my car to drive back home and thought that there was a complete blackout in my suburb. I have no idea how I made it home safely but luckily my work was just around the corner. I took a shower, went to sleep and thought to myself that the lights will be back onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. by tomorrow morning. I woke up that morning and everything was black and gray. I took a few steps and fell down the stairs. My parents were immensely worried and ran to help me. At that moment, I realised that there was no blackout in my suburb but a blackout was happening within my vision. My mum instantly drove me to my GP who turned around and said, “Take her to the Emergency Room now, your daughter has gone blind!” I was admitted to hospital for 5 days and an investigation for my presentation began. An Magnetic Resonance ImagingA noninvasive imaging technique that uses strong magnetic fields to produce images of nearly any structure of the body. For MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , it is typically used with and without contrast to identify disease activity in the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve. (MRIA noninvasive imaging technique that uses strong magnetic fields to produce images of nearly any structure of the body. For MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , it is typically used with and without contrast to identify disease activity in the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve.) at the time revealed that the intra-orbital segments of the optic nervesThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. oligodendrocyte glycoproten antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. disease (MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease ), they may be the target of inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. or lesions, sometimes causing visual disruption or blindnessAny alterations in your ability to see normally which may include blurred vision, cloudy vision, double vision, color change, seeing spots in your vision, or loss of vision. Vision changes may occur in one or both eyes. With MOGAD, vision changes are caused by optic neuritis.. were swollen bilaterally with signal hyperintensity and enhancement. During the clinical examination, I had bilateralRefers to disease or attack onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. two sides. optic disc swelling, poor Visual Acuity (VA) bilaterally and I couldn’t see anything onInflammation of the optic nerve that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. the Ishihara chart. My Visual Field Index (VFI) was 27% in the left eye and 4% in the right eye. I was given 3 doses of IntravenousA way of giving a drug or other substance through a needle or tube inserted into a vein. MethylprednisoloneA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths.. In adults, it is sometimes used in high doses for acuteThe severe and sudden onset of a disease process. attacks. In some adult patients, it may be used for 1-2 months after an acuteThe severe and sudden onset of a disease process. attack to avoid a rapid onset of relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flare by the myelin oligodendrocyte glycoproten antibody disease (MOGAD) community).. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acuteThe severe and sudden onset of a disease process. attack, but it is not recommended long-term due to the profound effects of chronic steroidsA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child's health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency) onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. a child’s health. Use of oral prednisoneA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child's health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency) as a maintenance therapy in relapsing pediatric MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid DependencyMay occur for MOGAD patients when tapering to a lower dose of steroids causing recurrance of symptoms and may cause a relapse of new disease activity.) (IVMP) under the Optic NeuritisInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. Treatment Trial (ONTT) protocol. Diagnosis: Simultaneous BilateralRefers to disease or attack onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. two sides. Optic NeuritisInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. (BON) with suspected autoimmuneA disease in which the immune system incorrectly targets and attacks an individual’s own healthy cells. etiology; a clinically and radiologically isolated presentation. All my antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. oligodendrocyte glycoproten antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. disease (MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease ), the body incorrectly produces an antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. that targets myelin oligodendrocyte glycoproteinA type of protein involved in cell adhesion. Present throughout myelin sheaths., a component of the myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheath in the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve. tests were negative and I was given up to 5 years to

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

June 6, 2020 1 Comment

My name is Andrea Mitchell and this is my MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. AntibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. DiseaseOften referred to as MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , Anti-MOG, MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. Ab+, MOG Antibody DiseaseOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. Associated AntibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. Disease, MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. positive disease story. I am a patient ambassador for UCB and the Director of Blind Resources for The MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. Project. MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. AntibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. DiseaseOften referred to as MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated AntibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. Disease, MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. positive disease (MOG-ADOften referred to as MOGAD, Anti-MOG, MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. Ab+, MOG Antibody DiseaseOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. Associated AntibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. Disease, MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. positive disease ) is a neurological, immune-mediated disorder in which there is inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogenA microorganism that causes, or can cause, disease., and usually results in the desctruction and removal of the pathogenA microorganism that causes, or can cause, disease. and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG)A type of protein involved in cell adhesion. Present throughout myelin sheaths. by the immune system, resulting in damage to myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheaths. in the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. oligodendrocyte glycoproten antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. disease (MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease ), they may be the target of inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. or lesions, sometimes causing visual disruption or blindnessAny alterations in your ability to see normally which may include blurred vision, cloudy vision, double vision, color change, seeing spots in your vision, or loss of vision. Vision changes may occur in one or both eyes. With MOGAD, vision changes are caused by optic neuritis.., spinal cord and/or brain. Myelin oligodendrocyte glycoproteinA type of protein involved in cell adhesion. Present throughout myelin sheaths. (MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths.)A type of protein involved in cell adhesion. Present throughout myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheaths. is a protein that is located onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. the surface of myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. is damaged, these impulses slow down. sheaths in the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness.. I am hoping to help other people going through this condition understand the importance of getting immediate treatment when having a relapseWhen you present to your doctor or hospital with new or worsening central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flare by the myelin oligodendrocyte glycoproten antibody disease (MOGAD) community).. (Also referred to as a flareRefer to Relapse. by the myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. oligodendrocyte glycoproten antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. disease (MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease ) community).. 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 IVA way of giving a drug or other substance through a needle or tube inserted into a vein. fluids and testing to see what was going onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement.. 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 MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. 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 onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. what was about to happen. I woke up onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. 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. 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 ophthalmologistA board-certified medical doctor that specializes in diseases and disorders of the eye. in Walnut Creek, Ca. He noticed that my optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. was swollen in my left eye and that was causing the blindnessAny alterations in your ability to see normally which may include blurred vision, cloudy vision, double vision, color change, seeing spots in your vision, or loss of vision. Vision changes may occur in one or both eyes. With MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , vision changes are caused by optic neuritisInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement... I could tell by his expression that something was really wrong. He sent me to the emergency room where they admitted me

A Story of ADEM and a New Illness: MOG Antibody-Associated Disease

June 3, 2020 3 Comments

At 5 years old, my daughter Isabel was a beautiful, bubbly girl with no health problems. I took her to the Father-Daughter Dance and she became ill 2 days later. This was the start of what would amount to 3 hospital visits and 5 doctor visits with multiple misdiagnoses. One week after the Father-Daughter Dance, Isabel was admitted for what would turn out to be a misdiagnosed disease. At first, she was having seizuresA sudden, temporary disturbance in brain activity that causes changes in behavior, movement, sensation, or consciousness with active vomiting, extreme behavioral changes and her doctors did not know what was going onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement.. They continued to treat her for unrelated illnesses. Even while in the hospital, the doctors there attempted to discharge her, stating that it was only an infection and that she was fine. We told the doctors that it was something neurological and that she was in an altered mental state. They insisted that this was not the case and that we did not know what it was. By the next day, she was in the Pediatric ICU fighting for her life, paralyzed and unable to speak with absent seizures as well as other neurological problems and altered consciousness. The doctors treating her were concerned and told us she may not make it through the night as her body was shutting down and they were concerned her respiratory function may go next. In ICU the doctors said they would have to rule out meningitis and would have to do a lumbar puncture without sedation due to how far gone she was. They requested that we hold her down since there was no sedation. After the lumbar puncture, they diagnosed her with acuteThe severe and sudden onset of a disease process. disseminated encephalomyelitisAn initial and brief autoimmuneA disease in which the immune system incorrectly targets and attacks an individual's own healthy cells. attack that causes widespread inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. and damage to the brain, spinal cord, and optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness., typically in children. This initial attack establishes the basis for diagnosis. The MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. is detectable in a percentage of Acute Disseminated Encephalomyelitis (ADEM)An initial and brief autoimmune attack that causes widespread inflammation and damage to the brain, spinal cord, and optic nerve, typically in children. This initial attack establishes the basis for diagnosis. The MOG antibody is detectable in a percentage of Acute Disseminated Encephalomyelitis (ADEM) patients. patients., or ADEMAn initial and brief autoimmune attack that causes widespread inflammation and damage to the brain, spinal cord, and optic nerve, typically in children. This initial attack establishes the basis for diagnosis. The MOG antibody is detectable in a percentage of Acute Disseminated Encephalomyelitis (ADEM) patients., and at the time, it was believed to be a “one-time illness”. After getting high-dose steroidsA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths.. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acuteThe severe and sudden onset of a disease process. attack to avoid a rapid onset of relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flare by the myelin oligodendrocyte glycoproten antibody disease (MOGAD) community).. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acuteThe severe and sudden onset of a disease process. attack, but it is not recommended long-term due to the profound effects of chronic steroidsA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child's health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency) on a child’s health. Use of oral prednisoneA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child's health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency) as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid DependencyMay occur for MOGAD patients when tapering to a lower dose of steroids causing recurrance of symptoms and may cause a relapse of new disease activity.) she was able to come home, and it took over a month to get her walking onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. her own and drinking without a straw. The next 18 to 24 months we had her in therapy to help make almost a full recovery with only slight cognitive delay being noted. At the beginning of January and February of 2016, this supposed “one-time illness” attacked again. For 3 weeks we took her to 15 doctor visits with 9 different doctors and 3 hospital visits to be told nothing was wrong and that we were over-reacting. We continued to fight against these doctors and 3 weeks from the start and almost 2 years to the day of the first attack she had a relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flareRefer to Relapse. by the myelin oligodendrocyte glycoproten antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. disease (MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease ) community). of ADEMAn initial and brief autoimmuneA disease in which the immune system incorrectly targets and attacks an individual's own healthy cells. attack that causes widespread inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. and damage to the brain, spinal cord, and optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness., typically in children. This initial attack establishes the basis for diagnosis. The MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. is detectable in a percentage of Acute Disseminated Encephalomyelitis (ADEM)An initial and brief autoimmune attack that causes widespread inflammation and damage to the brain, spinal cord, and optic nerve, typically in children. This initial attack establishes the basis for diagnosis. The MOG antibody is detectable in a percentage of Acute Disseminated Encephalomyelitis (ADEM) patients. patients. with Optic NeuritisInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. (ONInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement.)InflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement.. However this time she was left blind in one eye and for several weeks, continued losing her vision in the other, along with extreme behavioral changes and severe headaches. Doctors then said that we were somewhat right but also wrong in that it was not a relapseWhen you present to your doctor or hospital with new or worsening central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flare by the myelin oligodendrocyte glycoproten antibody disease (MOGAD) community).. (Also referred to as a flareRefer to Relapse. by the myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. oligodendrocyte glycoproten antibody disease (MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease ) community). but what they thought was Multiple SclerosisAn autoimmune disease that attacks healthy cells in the myelin, the protective sheath that surrounds nerves in the central nervous system (CNS) leading to neurological symptoms originating from the brain, spinal cord, and/or optic nerve. (MSAn autoimmune disease that attacks healthy cells in the myelin, the protective sheath that surrounds nerves in the central nervous system (CNS) leading to neurological symptoms originating from the brain, spinal cord, and/or optic nerve.)An autoimmuneA disease in which the immune system incorrectly targets and attacks an individual's own healthy cells. disease that attacks healthy cells in the myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down., the protective sheath that surrounds nerves in the central nervous system (CNS)Nerve tissue that resides in and composes the brain, spinal cord, and optic nerve leading to neurological symptoms originating from the brain, spinal cord, and/or optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness.., a diagnosis without doing any testing. They then tried to treat her with MSAn autoimmune disease that attacks healthy cells in the myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down., the protective sheath that surrounds nerves in the central nervous system (CNS)Nerve tissue that resides in and composes the brain, spinal cord, and optic nerve leading to neurological symptoms originating from the brain, spinal cord, and/or optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness.. drugs. We had already done a great deal of our own research, and going on what we learned, we requested a new test for the anti-MOG antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and

The MOG Project

June 3, 2020 No Comments

In the Fall of 2013, my first year of college was finally beginning. I was loving life, embarking onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. new experiences, and finding my passions. I had always been a homebody growing up and my mom was my best friend – we always stayed connected. Things were going very well and I wasn’t worried about much going wrong at the time. One day in the Spring of 2014, I received a call from my parents. My dad told me that my mom had extreme pain in her eyes and was going blind. My family was in a state of confusion and fear. As I continued my semester, my family kept me updated onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. the status of her vision. My parents were going to doctors trying to get to the bottom of it. When we met for lunch, we had to help escort her around because her vision was “blocked” by a large dark spot. When I moved out of my dorm room in May, she perceived the evening daylight as darkness, thinking it was nighttime. I never would have guessed that this was what I would be coming home to for summer break. She was finally given a diagnosis – NMOSDA disorder of the central nervous system that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic’s Disease (Neuromyelitis Optica Spectrum DisorderA disorder of the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic’s Disease). NMOSDA disorder of the central nervous system that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic's Disease is a demyelinatingThe process in which the protective coating of nerve tissue (i.e. myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down.) becomes damaged or breaks down, causing nerve impulses to slow or halt that results in neurological problems. disease that attacks the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. or lesions, sometimes causing visual disruption or blindnessAny alterations in your ability to see normally which may include blurred vision, cloudy vision, double vision, color change, seeing spots in your vision, or loss of vision. Vision changes may occur in one or both eyes. With MOGAD, vision changes are caused by optic neuritis.. and spinal cord. My mom was put onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. RituxanThe common brand for this drug is RituxanThe common brand for this drug is Rituxan. A therapeutic drug that suppresses the immune system often prescribed in certain autoimmune conditions. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD), this medication is used to suppress the immune system to reduce disease activity.. A therapeutic drug that suppresses the immune system often prescribed in certain autoimmuneA disease in which the immune system incorrectly targets and attacks an individual's own healthy cells. conditions. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , this medication is used to suppress the immune system to reduce disease activity. and stayed onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. this treatment for four years. She was referred to Dr. Michael Levy for care, who is a world authority onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. NMOSDA disorder of the central nervous system that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic's Disease and heads research on this subject. He decided to treat her with RituxanThe common brand for this drug is RituxanThe common brand for this drug is Rituxan. A therapeutic drug that suppresses the immune system often prescribed in certain autoimmune conditions. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD), this medication is used to suppress the immune system to reduce disease activity.. A therapeutic drug that suppresses the immune system often prescribed in certain autoimmuneA disease in which the immune system incorrectly targets and attacks an individual's own healthy cells. conditions. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , this medication is used to suppress the immune system to reduce disease activity., but she had breakthrough attacks about once a year. Some attacks continued to further damage her eyesight, and some caused weakness, spasms in her legs, and loss of bladder control. Recently, Dr. Levy finished developing an antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. oligodendrocyte glycoproten antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. disease (MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease ), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoproteinA type of protein involved in cell adhesion. Present throughout myelin sheaths., a component of the myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheath in the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve. test at Johns Hopkins for MOGA type of protein involved in cell adhesion. Present throughout myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheaths.. MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. diseaseOften referred to as MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , Anti-MOG, MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. Ab+, MOG Antibody DiseaseOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , MOG Associated AntibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. Disease, MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. positive disease presents itself similarly to NMOSDA disorder of the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic’s Disease. The difference is the mechanism of the disease; NMOSDA disorder of the central nervous system that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic's Disease targets Aquaporin-4, while MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. diseaseOften referred to as MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , Anti-MOG, MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. Ab+, MOG Antibody DiseaseOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. Associated AntibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. Disease, MOG positive disease targets myelin oligodendrocyte glycoproteinA type of protein involved in cell adhesion. Present throughout myelin sheaths. (MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths.)A type of protein involved in cell adhesion. Present throughout myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheaths.. My mom tested negative for the MOG test in the past, but with Dr. Levy’s new, more sensitive test, she tested positive. She had finally found her smoking gun. This new diagnosis was significant for the path of her treatment plan. Since RituxanThe common brand for this drug is RituxanThe common brand for this drug is Rituxan. A therapeutic drug that suppresses the immune system often prescribed in certain autoimmune conditions. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD), this medication is used to suppress the immune system to reduce disease activity.. A therapeutic drug that suppresses the immune system often prescribed in certain autoimmuneA disease in which the immune system incorrectly targets and attacks an individual's own healthy cells. conditions. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , this medication is used to suppress the immune system to reduce disease activity. had not been working as well as expected, her medicine was then switched to CellCeptCellCept is the brand name for Mycophenolate MofetilCellCept is the brand name for Mycophenolate Mofetil (also sometimes referred to as MMF). It is an immunosuppressant medication often prescribed for some autoimmune conditions. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD), this medication is used to suppress the immune system to reduce disease activity. (also sometimes referred to as MMF). It is an immunosuppressant medication often prescribed for some autoimmuneA disease in which the immune system incorrectly targets and attacks an individual's own healthy cells. conditions. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , this medication is used to suppress the immune system to reduce disease activity.. Watching these series of events unfold has inspired us to take action on the lack of awareness for this rare auto-immune disease. The MOGA type of protein involved in cell adhesion. Present throughout myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheaths. Project is a campaign that we have launched under the umbrella of SRNA that advocates for a spectrum of rare neuroimmuneA term that refers to the components of the immune system that acts in and affects

Breaking Through The Darkness

August 22, 2019 1 Comment

My name is Andrea, and I was officially diagnosed with MOG antibody diseaseOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease (MOGAD) in 2013. At that time, there was not much known about the disease. The first two years after the diagnosis were especially hard as I lost most of my sight in both eyes. I am writing my story to help others and provide a resource for the newly blind.