Deciding if changes I experience are new NMOSD symptoms
It can be difficult to tell what's what in autoimmune diseases like mine
As I sat at the table across from my family, I forced an appreciative smile. But the smell of the home-cooked meal — lemon herbed potatoes, Greek chicken, and brown rice — was suddenly too much for me to handle.
My husband had been working on this perfectly cooked meal for hours, and I desperately didn’t want to offend him. I barely had three bites of it, so I tried to force myself to eat the garlic naan slice, telling myself that I needed the calories. But though I felt hungry, I couldn’t eat it. I cleared my plate into the garbage disposal.
I decided my palate might need something simpler, so I washed an apple and carried it upstairs to my home office. Perhaps some work there might encourage me to eat mindlessly. The first bite of the apple was fine, but the second bite was suddenly offensive. I swear I could taste the pesticide on the apple skin. Each bite tasted artificial, like rubber. By the fourth bite, I couldn’t consume any more.
Over the past week, my appetite has gradually disappeared, and I have no explanation. That’s the thing about living with neuromyelitis optica spectrum disorder (NMOSD) — I’m never sure if a symptom is tied to my disease (and just new and unexplained) or if it’s related to something else.
When such an issue develops, my first instinct is to avoid panic. But as time goes by, I feel weaker, and at some point, I need to acknowledge what’s happening. Then I reach out to other NMOSD patients by posting through online support groups, and they tend to be sympathetic and understanding.
I searched for “loss of appetite” within a group, and all the results came back with explanations related to medication side effects. I haven’t started anything new other than Uplizna (inebilizumab-cdon), but it’s been weeks since I took my first two doses.
Most people know that once you have one autoimmune disorder, you’re more likely to contract another. My team of doctors has already flagged other disorders as high probabilities for me, including lupus, diabetes, and vasculitis. The challenge is getting a definitive diagnosis for any of these because my current NMOSD treatment can mask their biomarkers. Thus, it’s difficult to determine if a new symptom is because of NMOSD or something else.
Time for the experts
I’m continuing to go to the gym, working four times a week with my trainer, who recognized that my energy level has dropped from its usual. I’m typically quite hungry after a workout, so I had high hopes that a good sweat might encourage my appetite. But all week it never happened. After every workout, I consumed a yogurt cup with some granola, but I again felt like I was forcing the food into my body.
When new symptoms come up, I usually give my body some time to work them out. Sometimes I just need some sleep and rest to get over them. Other times, I try to distract myself with activities. But when a symptom lingers for several days, I know it’s time to seek medical advice from the experts.
Living with NMOSD can be frustrating because every day has the potential to be different, and no one patient has the same experience as another. NMOSD patients can take many of the same treatments, but the way our body reacts to them, metabolizes them, and uses them can be different. Thus, it stands to reason that symptoms could also vary and affect patients differently, too.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.
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