Some people may only experience transverse myelitis or optic neuritis but, if they have a specific antibody associated with NMO (AQP4) in their blood, they will be said to have NMO spectrum disorder (NMOSD). The optic nerve from the eye to the brain can also become inflamed – a condition called optic neuritis. In many people with NMO, the spinal cord becomes swollen and irritated (inflamed).

tight and painful muscle spasms in the arms and legs.

pain in the arms or legs – described as sharp, burning, shooting or numbing.

Symptoms of NMOĮach person will experience different symptoms, which can range from mild to severe.

NMO can affect anyone at any age, but it's more common in women than men. I am eager to learn more about Acute Disseminated Encephalomyelitis (ADEM), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), MOG Antibody Disease (MOGAD), and Transverse Myelitis (TM), including Acute Flaccid Myelitis (AFM), so I can pay it forward by helping to spread awareness and raising funds for research with the ultimate goal of finding a cure, as, for many, it is a race against time.Neuromyelitis optica (NMO), also known as Devic's disease, is a rare condition where the immune system damages the spinal cord and the nerves of the eyes (optic nerves). Our mission is to represent MOG patients, their families, and caretakers that are seeking resources to help deal with the ins and outs of this very rare disease. I am proud to be a volunteer for SRNA, and I am grateful that they were able to take us under their wings. Since my Rituxan treatment has kept me stable, with zero flares, there was no need to change my treatment.Ī great friend of mine, her daughter, her sister, and myself have started what we call the MOG project. So, my diagnosis was changed from NMO to MOG Antibody Disease. The blood test results for this disorder came back positive. In February 2018, I was tested for another antibody called Myelin Oligodendrocyte Glycoprotein (MOG). I currently receive four Rituxan IV treatments every year. Levy was able to give me the diagnosis of NMO based on diagnostic criteria, even though I tested negative for the NMO antibody, which is not unheard of. I was immediately started on a preventative treatment. Michael Levy. He is an Associate Professor of Neurology at Johns Hopkins and also one of the top NMO specialists worldwide. On the second day of my hospital stay, my vision had been mostly restored. I was then referred to Dr. Shalom Kelman, and based on all of my neurological symptoms, he suspected that I had NMO, and not MS. He immediately had me hospitalized, and IV Solu-Medrol was given to me. I woke up blind in my right eye, I had terrible back pain, and I hadn’t walked straight for two days prior. Who knows how well I would be functioning right now if I had been treated with the wrong drugs. Some of the preventative treatments for MS can actually make Neuromyelitis Optica (NMO) worse. The last Optic Neuritis flare was just five days prior to my first visit with a multiple sclerosis (MS) specialist, which very well could have made a bad situation into a worse situation. I had three more Optic Neuritis flares within a year’s time. He examined me and diagnosed me with Optic Neuritis. After seeing several more specialists, I was referred to Dr.

I decided to go to the emergency room, knowing there was something terribly wrong. They examined me but didn’t find anything wrong with my eye. Every time I moved my eyes from side to side, glitches of pain and light appeared. 2022 Rare Neuroimmune Disorders SymposiumĪbout five days later, the eye pain started.COVID-19 and Rare Neuroimmune Disorders.

Mog disease life expectancy