Ever get that quiet, nagging sense that something in your body just isn’t right? For me, it started with extra trips to the bathroom — nothing dramatic, just enough to make me pause. Before long, I realized I was dealing with yet another bladder infection. Living with a rare autoimmune…
quality of life
It was one of those stressful moments when I simply did what needed to be done. My mother had been visiting us in the city for a couple of weeks, and I was sending her home on the train. Parking here in downtown Toronto is nearly impossible, so my husband…
Some days I feel like I’m made of symptoms. Living with neuromyelitis optica spectrum disorder (NMOSD) means navigating a body that’s constantly shifting beneath me, unpredictable in ways that defy preparation. Speaking of symptoms: One moment, my spine burns with relentless pain. The next day I’m ravenous, only…
I hit harder than NMOSD ever can
Do you ever feel like the punches keep coming? Living with neuromyelitis optica spectrum disorder (NMOSD) can sometimes feel a lot like that. I’m a boxer, stuck in a corner with no way to avoid those vicious and cruel punches landing square in the face. Life, especially one with…
Problems in the autonomic nervous system (ANS), which regulates involuntary bodily processes such as heart rate, blood pressure, and digestion, are very frequent among people with neuromyelitis optica spectrum disorder (NMOSD), a study has shown. All 80 NMOSD patients in the study experienced ANS-related symptoms, and a greater burden…
Neuromyelitis optica spectrum disorder (NMOSD) patients have significantly poorer nutritional status than healthy people which is associated with worse quality of life, a study found. Longer disease duration; poor sleep quality; being a woman; and higher levels of anxiety, depression, or fatigue were found to be significantly associated with…
Symptoms related to the autonomic nervous system, which controls automatic bodily function, have a significant impact on the quality of life of people with neuromyelitis optica spectrum disorder (NMOSD), according to a questionnaire-based study. All patients in the study experienced some autonomic system-related symptoms, or autonomic dysfunction, and most…
About a third of adults with neuromyelitis optica spectrum disorder (NMOSD) have cognitive impairments, affecting mostly visual learning and memory, according to a small Spanish study. Mood, fatigue, and satisfaction with life were among the contributing factors to cognitive impairment. According to the researchers, cognitive…
Since 2012, I have been using Rituxan (rituximab) to treat my neuromyelitis optica. I had no major complaints about it until 2018. My neurologist back then referred me to an immunologist, who recommended I start immunoglobulin replacement therapy (IVIG) to increase the levels of immunoglobulins that had been…
It is so important to get a good night’s sleep in order to function well the next day. A good night’s sleep energizes me and makes me feel like my body is being repaired while I sleep. Unfortunately, this doesn’t happen for me every night. Still, I…
Recent Posts
- 17-year-old advocate shares her NMOSD story to raise awareness
- Brain, nerve damage link to relapse, disability in AQP4-related NMOSD
- With NMOSD, my to-do lists now include staying well, as well as staying busy
- Advocates join forces to create, celebrate World NMOSD Awareness Day
- With a compromised immune system, constant infections are my nemesis