Surveillance should lead to the prevention of complications and thus a reduction in mortality and morbidity of patients.Ī combined approach based on wireless capsule endoscopy, magnetic resonance enterography and device-assisted enteroscopy is effective in reduction of the polyp burden and thus decreasing the risk of bleeding and intussusception. Individuals suffering from Peutz-Jeghers syndrome have an increased lifetime risk of various forms of cancer (gastrointestinal, pancreatic, lung, breast, uterine, ovarian and testicular). Hamartomatous polyps located throughout the gastrointestinal tract can be complicated by bleeding and small bowel intussusception, potentially leading to the need for emergency surgery. 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.Peutz-Jeghers syndrome is a rare, autosomal dominant, hereditary polyposis syndrome defined by gastrointestinal hamartomas and mucocutaneous pigmentations, caused by a germline mutation in the serine/ threonine kinase 11 or liver kinase B1 (STK11/LKB1) genes. 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.
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