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As someone with neuromyelitis optica (NMO), I am no stranger to steroids. Like most NMO patients, I have a love-hate relationship with them. I jokingly refer to them as “the devil’s Tic Tacs” because of the potential side effects, many of which can be quite serious. On the flip side,…

When I was misdiagnosed with multiple sclerosis (MS), and five years later, properly diagnosed with neuromyelitis optica (NMO), I was told that a hallmark symptom of each disease was optic neuritis. This occurs when the immune system mistakenly attacks the optic nerve, causing inflammation, which can lead to…

Tests, treatments, and medical procedures are important, but they can be a hassle and are sometimes painful. I don’t always know what to expect, which creates anxiety, especially if a needle is involved. As a neuromyelitis optica (NMO) patient, I have had bloodwork, MRIs, and spinal taps, and I…

As a rare disease patient with neuromyelitis optica and comorbidities, my medical care is complicated. I have an extensive healthcare team that includes: a family doctor a neurologist and neuro nurses a rheumatologist three pharmacists a home infusion nurse an immunologist three endocrinologists a physiatrist a gastroenterologist…

In 2012, I had the unpleasant experience of receiving unexpected out-of-network medical bills for a hospitalization in Florida. There was nothing I could do about it. At the time, I wasn’t aware of any laws that might have protected me. But I now know that Florida is among the…

Six months ago, a blood test revealed that I had developed a rare side effect — a condition called hypogammaglobulinemia — from a biologic I’ve been on for five years for neuromyelitis optica (NMO) as well as two types of arthritis.

My heart goes out today to the neuromyelitis optica (NMO) patients in Cuba for two reasons. Firstly, it is difficult for them to access treatment right now. Secondly, the island is experiencing tropical weather. Neither factor is helpful for NMO patients. Mileidys wonders if we are in the…

Fourteen years ago, when I was in the process of being diagnosed, I suffered a major neuromyelitis optica (NMO) attack on my spinal cord. The resulting transverse myelitis robbed me of the feeling in my arms and hands. As an artist, this was utterly devastating. My manual dexterity…

Years ago, I saw a film called “Lorenzo’s Oil,” which was based on actual events. A child, Lorenzo, got sick with a rare disease, and his health deteriorated quickly, but nobody could help him. His parents were determined to find a cure. I greatly admired their tenacity, and I’m…

Summer has always been a struggle for me. While most people celebrate the warmer months and are off enjoying the great outdoors, I dread this time of year because I am very heat-sensitive. As soon as the temperature rises above 22 C (72 F), I feel terrible. The signals…