Newly Diagnosed with NMOSD: First Steps & Treatments

So, you've been diagnosed with NMOSD. What do you do now?

I was diagnosed with NMOSD in the middle of a pandemic. Looking back to that moment, my neurologist said to me, "You have a condition called neuromyelitis optica. This is a rare, autoimmune disorder." I think about how I reacted, what I should have done next, and the things I needed to look into. Increased exposure and awareness of this condition over the past year have made it much easier for the newly diagnosed to find valuable resources.

After diagnosis, it's time to jump into action. What happens next?

The first steps after an NMOSD diagnosis

Keep in mind that disability with NMOSD is cumulative and is the result of each attack damaging new areas of the central nervous system.¹ Get checked out immediately if you think you’re having NMOSD symptoms. Once you get a diagnosis, give yourself some time to just breathe and process it all. When I got my diagnosis, I actually felt relieved. After that scary attack on my body, I finally had an answer for why everything was happening

Managing the initial attack with high-dose steroids

More often than not, it's likely you will be given a high dose of steroids to calm and stop the attack. This can happen either inpatient through IV or outpatient with a pill prescription. It's no secret that steroids are awful for many, but the drugs are quality-of-life savers for people suffering from NMOSD.

Transitioning to long-term immunosuppressants

Every treatment may be different from those of others who also suffer from NMOSD, so it's important to not compare. Once you finish your first round of steroids, you’ll start taking immunosuppressants. These are the drugs that are used to treat autoimmune diseases.² Your doctor will determine which immunosuppressant is right for you, and you will continue to receive this medication, well.... for life. Sounds scary, right? I was terrified, too.

Understanding how immunosuppressants protect your system

Immunosuppressants become part of your normal routine; an extension of "what you do". The purpose of these drugs is to suppress or reduce the strength of the body’s immune system.³ These medications come in the form of an infusion that you receive intravenously. Sometimes, your doctor may prescribe pills. It's important to discuss any side effects with your doctor to ensure you're on the right medications. Never abruptly stop taking these medications or infusions.

Researching NMOSD and advocating for your care

Things can seem a bit chaotic initially, but rest assured, it settles. When it does, it can seem like an overwhelming amount of information to understand initially. Time to do your research. When you are looking into the details, look for topics such as:

• What is NMOSD?
• What are the symptoms of NMOSD?
• What causes this condition?
• What are the available treatment options?
• What is the quality of life with this condition like?

It's not all rosy, but it's manageable

Some details you come across may be a bit disheartening or difficult to hear. Keep in mind that NMOSD can be managed with a proper care plan that you and your doctor will discuss. Do your best to get the most out of the information you find. This will come in handy as you learn to advocate for yourself.

Have you been recently diagnosed with NMOSD? Tell us your story!