symptoms

I’m a self-sabotaging, push-the-limits kind of gal. The worst kind of patient. The sort of patient doctors warn their interns about. Yes, I know I should be following their recommendations, nodding politely when I’m told what to do, but my neurologist and I both know that I probably won’t listen.

If I had a dollar for every time someone said, “I shouldn’t complain to you,” I could probably fund my own research grant. It usually happens right after someone shares something stressful, such as their work drama, tough dental work, or a recent bad infection, and then suddenly they remember…

I’ve been a list builder for as long as I can remember. Even as a kid, I found comfort in writing things down, mapping out what needed to be done, and crossing items off one by one. Lists gave me structure. They still do. I like to stay busy, not…

It’s astonishing how quickly life can shrink down to just the present moment when you’re living with a chronic illness like neuromyelitis optica spectrum disorder (NMOSD). Its symptoms have a way of pulling you into the now with an intensity that can feel all-consuming, whether it’s managing fatigue,…

Soliris (eculizumab) may help relieve symptoms during severe attacks in the acute phase of neuromyelitis optica spectrum disorder (NMOSD) when other treatments are ineffective, according to a case series study from Japan. The study included five patients who had experienced severe NMOSD attacks that did not respond well…

Sometimes I stand in the shower, and time just slips by. I numbly run my fingers through my thick hair, and I’m immediately brought back to reality by the chunk of hair in my hand. Hair loss can be a side effect of several medications, including prednisone,…

Recovery is a long, windy road and I am not here for it. I deserve a break after having two optic neuritis attacks in the last couple months. Each episode was treated with a five-day regimen of Solu-Medrol (methylprednisolone) infusions, and then my medical team inserted a port…

People who develop neuromyelitis optica spectrum disorder (NMOSD) at an older age are more likely to experience spinal cord inflammation and less likely to have eye nerve involvement, not only in the first attack but also in subsequent relapses, a study has found. In addition, data show “different relapse…

My health situation has become incredibly trying recently. I’m hesitant to shed any tears because I fear they won’t stop. When I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), I was told I might face one or more additional autoimmune diseases in my lifetime. Initially, this warning seemed…

Dear Reader, It’s me, Jennifer, hoping you don’t mind if I occupy the tiniest space in your mind for the shortest amount of your time. This request is because I feel insignificant right now. When people point out that I’m sick, when they comment on visible symptoms of my…