Building a strong relationship with your NMOSD healthcare provider

This is part of a series about neuromyelitis optica for NMO Awareness Month. Go here to read more.

Building a strong relationship with your neuromyelitis optica spectrum disorder (NMOSD) healthcare provider may feel daunting, especially if you’re newly diagnosed or switching doctors.

At first, it can feel intimidating: Your specialist is the expert, while you are in a vulnerable situation trying to navigate your new NMOSD diagnosis. To address the imbalance, you’ll want to find your voice so that you can ask the tough questions and stay informed.

A collaborative, trusting partnership can help you get the best possible care to support your long-term health.

Since you want this to be a long-term relationship, prioritize being seen as a person first and a patient second. Don’t hesitate to share about who you are, your goals, and your approach to living with NMOSD.

Questions to ask

Prepare for your first meeting by writing down your medical history, current symptoms — such as vision problems, pain, or difficulty with mobility — and any treatments you’ve tried or are currently using. Bring a list of questions with you so that you obtain all the information you need.

Let your doctor know how NMOSD is affecting you and what your personal goals are for managing it. Perhaps you’ll want advice for dealing with its impact on your daily routine or strategies for managing pain.

The types of questions you ask can give your doctor a sense of what is important to you when it comes to managing your condition. It’s also a way for you to know if they’re the right person for your care needs.

Some questions to consider:

• What NMOSD treatments do you recommend for me and why?
• Are the treatments preventive, symptomatic, or aimed at reducing relapses?
• What are the possible side effects of the treatments, and how do I manage them?
• What signs or symptoms need immediate attention?
• What imaging tests or lab work might be needed to monitor my NMOSD?
• How often are follow-up appointments needed?
• Are there lifestyle changes that can help me manage my condition and improve my quality of life, such as for diet, exercise, stress management, and sleep?
• What is the best way to reach you when I have concerns? Do you usually respond within a certain amount of time?

Also ask how familiar they are with NMOSD, how many patients with NMOSD they’ve treated, and whether they like to work with a multidisciplinary team.

What to look for

Discussions with anyone on your healthcare team should always feel productive, not dismissive.

NMOSD is typically treated by neurologists, especially those with experience in autoimmune diseases or neuroimmunology. Other healthcare specialists who may be involved in your care include immunologists, physical and occupational therapists, and mental health professionals.

As you experience your NMOSD journey, you’ll encounter a range of challenges, including everything from bladder incontinence to sexual function, to mental health. So you’ll want to make sure you’re comfortable enough to broach these topics in conversation, if needed.

Your healthcare provider should always be open to listening to your questions without judgment, answering respectfully and clearly, and explaining the reason for any recommendations or changes to your care plan.

Good healthcare providers will also refer you to other specialists when necessary, which may mean that your concerns are being heard.

Other positive signs that the provider may be a good fit include:

• takes time to explain NMOSD and your treatment options
• shows empathy and listens to all of your concerns
• values your input and engages you as an active partner in your care
• treats you as a person and not another patient file.

Signs to watch out for include:

• rushes through appointments
• doesn’t take your concerns seriously
• avoids answering your questions
• becomes defensive when you disagree with something
• minimizes your NMOSD experience.

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.