The Initial Diagnosis
So, you've been diagnosed with NMOSD. What do you do now?
My NMOSD diagnosis story
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. In the past year, there has been so much exposure and awareness of this condition making it a lot easier to find valuable resources for those who are newly diagnosed. After diagnosis, it's time to jump into action. What happens next?
What to do right after your 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.2 Getting yourself checked out as soon as possible is imperative if you feel like you're experiencing any NMOSD related symptoms. After you've been seen by a doctor and received an NMOSD diagnosis, take a moment and process everything. When I received my diagnosis, I was relieved to have finally found some reason as to why I was feeling the way I was, having experienced such a horrendous attack on my body that I didn't understand.
You might start with 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.
Every treatment may be different from others who also suffer from NMOSD, so it's important to not compare. After you've completed the initial round of steroids as directed by your neurologist, it's time to move on to immunosuppressants, which are 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.
Immunosuppresants: just part of your routine
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.
Understanding your NMOSD diagnosis
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:
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!
Were you misdiagnosed, prior to being diagnosed with NMOSD?