Every time I turn to Dr. Google, I get an immune system mystery

Why does it seem like every Google search I do regarding my health blames my weakened immune system for whatever is happening on a particular day? Take, for example, one simple question I innocently asked: “Why are my feet so dry?” Suddenly, I was knee-deep in results suggesting I was dehydrated, vitamin-deficient, wearing the wrong socks, and, of course, that my immune system might also be to blame. Apparently, everything from dry feet to my neighbor’s cat’s sneezing fits can somehow be traced back to my neuromyelitis optica spectrum disorder (NMOSD).

I decided to put my theory to the test. I searched for answers about my other ailments — an itchy scalp, a mysterious earache, tennis elbow pain, and canker sores — to see if my immune system would be blamed again by the websites that came up. Sure enough, the same explanation kept popping up. It’s as if NMOSD is Google’s go-to scapegoat for me whenever there’s no clear answer to my questions.

If my immune system is supposedly causing my dry feet, itchy scalp, earache, tennis elbow, and canker sores, I figured it was time to get to know it better. Simply put, the immune system is like border security for your body: It checks IDs for germs, viruses, and all sorts of unwelcome guests, kicking out the riffraff and letting healthy cells through. It’s a clever network of organs, cells, and proteins working together, and when it’s off its game, all sorts of little annoyances, and sometimes bigger ones, can appear.

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When should I call the doctor?

For NMOSD patients like me, figuring out when to call a primary care provider versus a neurology specialist can be tricky. How do I know if an annoying itch, ache, or sore is just part of daily life with NMOSD or something more serious? I feel like I’m constantly treating one ailment or another because my body can’t fight off even simple infections.

With NMOSD, my immune system has gone rogue, targeting my own nerve cells instead of defending them. I now follow a personal rule: If a symptom, like numbness, vision changes, or intense pain, is new, severe, or lasts more than 48 hours, I call my specialist. For everything else, I reach out to my general practitioner. Still, I always have a nagging worry in the back of my mind: Is my quirky immune system just acting up, or is it quietly plotting a full-blown mutiny?

Here’s where things get delightfully confusing. The internet is packed with advice on how to boost your immune system: Eat more kale, take multivitamins, even bathe in apple cider vinegar. But with NMOSD, I’m treated with Ultomiris (ravulizumab-cwvz) every eight weeks to suppress my immune system. Like many other patients, it’s imperative for me to be on a treatment plan that keeps my body from attacking itself. So should I be chugging green smoothies or avoiding them? Can I actually boost my immune system without it backfiring? While exercise, good sleep, and balanced nutrition are always smart, it’s crucial to consult with a medical team before trying supplements or immune-boosting trends.

For those of us with NMOSD, the real challenge is balancing our health without accidentally provoking an already overzealous immune system. Searching for answers online can feel like being a detective in a never-ending mystery where NMOSD is always the prime suspect. Honestly, I’ll probably keep turning to Google first — not because I distrust my healthcare team, but because I want to arrive at appointments feeling informed. Doing my own research from credible sources helps me know what to expect and ask better questions.

Living with NMOSD has taught me that not every ache is an emergency, and not every symptom warrants panic. If asking questions — even on Google — helps me feel prepared rather than powerless, I’ll keep doing it, as long as I remember not every minor symptom is the beginning of the end.

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.