Selecting the right healthcare practitioners to treat my NMOSD

Selecting healthcare practitioners is a daunting task, especially when you’re diagnosed with a rare disease like neuromyelitis optica spectrum disorder (NMOSD). I visited several physiotherapists, massage therapists, and dietitians before settling on my current team. Through my experiences, I’ve discovered the key questions to ask up front to determine if a practitioner is the right fit for me. However, the greatest factor is whether I like them or not.

I spend a lot of time with my practitioners, and while they usually see me on my good days, they also witness my worst ones. When NMOSD rears its ugly head, I rely on them heavily for support, as they play an integral role in my recovery. When you spend this much time with anyone, developing a strong relationship is essential.

First, it’s important to know if my practitioners have experience working with autoimmune patients. My preference is that they’re familiar with NMOSD, but since it’s a rare disease, I’m comfortable if they’ve worked with multiple sclerosis patients. This makes it easier to explain when my body feels like it’s filled with lead, my skin is on fire, or certain movements trigger a spasm.

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Next, I always ask about their treatment process. Do they research their patients’ conditions? When a new symptom appears, how do they adjust the treatment plan?

When I first started working with my acupuncturist, she asked many questions about NMOSD and then requested I return the next day. When I did, she mentioned that she had consulted her old colleagues — neurologists in Beijing — to better understand how to treat me. As a result, she was able to stop the burning sensation I was experiencing that same day.

The relationship I have with my physiotherapist has become my benchmark for how I prefer to work with healthcare practitioners. At the start of each session, he asks how I feel, which shows his deep understanding of the fact that the only consistent thing about NMOSD is its inconsistency. He lets me take the lead in my healthcare but is always ready to make recommendations. If I’m feeling strong, for example, he’ll suggest exercises to develop weaker muscles. But if I walk in feeling fatigued, we’ll start with fascial stretch therapy, which is assisted stretching focused on the fascia and joints, before finishing with light movement exercises.

One of the things I appreciate most about my practitioners is their ability to be empathetic toward my NMOSD challenges. There are days when I struggle to articulate my frustration with my body, but because I’ve worked with my team for so long, they can recognize when I’m not my usual self. My physiotherapist is especially attuned to this, given his own health challenges. He understands those moments of disappointment and defeat. A simple hug and words of encouragement help pull me out of my funk. He knows I hate dwelling on the negative aspects of NMOSD, so he shifts my focus to what I can do that day.

Lastly, I try to work with practitioners who are covered by my private insurance or who are reasonably priced because I do see them regularly. I don’t mind paying out of pocket for excellent care, but this can get costly if I’m not watching my budget. While our public healthcare system here in Canada offers some care, such as with a physiotherapist or a dietitian, the waitlist to see them is long. In addition, when these practitioners have so many patients, it’s difficult for them to provide the level of care that I require.

Building the right healthcare team takes time, but once you find practitioners who understand your condition, listen to your concerns, and truly care, they become more than just providers; they’re partners in your journey.

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.