Feel like you have control again. NMOSD shouldn't define you anymore.
This website is about helping you find that feeling of control, no matter where you are on your NMOSD journey.
Images are for illustrative purposes only,
Not an actual patient.
The NMOSD Podcast Series
Experts discuss topics from diagnosis to living well with NMOSD
VIEW THE EPISODES
Living with NMOSD
NMOSD doesn’t have to define who you are. That’s not to say it won’t present challenges for you and those you love, but there are many things you can do to help yourself live with NMOSD.
Staying active helps; ask your doctor about exercises that can help maintain and restore flexibility, movement, and strength.
Life can be exhausting even without NMOSD; it’s important to get a decent night’s sleep and take rests throughout the day to reduce fatigue.
Stress of any kind can take a toll on your mental health and NMOSD adds another layer of stress; speaking to a mental health professional may help.
Sometimes’s it’s also good to get a little extra help; talk to your doctor about working with an occupational or physical therapist, and ask about other resources you can access.
It seems like there are never enough hours in a day and NMOSD can make getting things done even more challenging; it helps to plan out tasks so they are easier to perform (like menu planning and spreading out chores).
Often we can start to have bladder or bowel issues with age, and NMOSD can make this an even bigger challenge; it’s a good idea to talk to your healthcare provider about things you can do to manage bladder or bowel problems.
The people you love are also going to find this journey difficult, and they often form the foundation of your support network; family education can help your loved ones understand the challenges of living with NMOSD.
Staying active helps; ask your doctor about exercises that can help maintain and restore flexibility, movement, and strength.
Life can be exhausting even without NMOSD; it’s important to get a decent night’s sleep and take rests throughout the day to reduce fatigue.
Stress of any kind can take a toll on your mental health and NMOSD adds another layer of stress; speaking to a mental health professional may help.
Sometimes’s it’s also good to get a little extra help; talk to your doctor about working with an occupational or physical therapist, and ask about other resources you can access.
It seems like there are never enough hours in a day and NMOSD can make getting things done even more challenging; it helps to plan out tasks so they are easier to perform (like menu planning and spreading out chores).
Often we can start to have bladder or bowel issues with age, and NMOSD can make this an even bigger challenge; it’s a good idea to talk to your healthcare provider about things you can do to manage bladder or bowel problems.
The people you love are also going to find this journey difficult, and they often form the foundation of your support network; family education can help your loved ones understand the challenges of living with NMOSD.
Find the resources you need to gain more control and avoid feeling isolated.
You’re not alone. Yes, NMOSD is a rare disease, affecting up to ten people per 100,000; that’s equivalent to up to ten people in a city the size of Nanaimo, BC.
We’re not sure why but it impacts women more than men; NMOSD is up to 10x more common in women.
Who gets NMOSD?
NMOSD is something that tends to happen as people move into the busy middle period of their lives; the average age of onset is around 40 years old.
You probably didn’t inherit this and most likely won’t pass it on; NMOSD is not believed to be hereditary.
What is it?
Neuromyelitis Optica Spectrum Disorder (NMOSD) is a rare, chronic disorder where your immune system attacks the nerves of your eyes, brain and spinal cord. These attacks can be unpredictable and can happen again and again; most people living with NMOSD have another attack within a year of their first attack.
Symptoms of NMOSD
Your symptoms may not be same as someone else with NMOSD. People tend to experience effects in either the eyes or the spine first, and can have hiccups, nausea or vomiting as well.
Eye pain, blurred vision, loss of colour vision, blindness
Loss of senses, arm or leg weakness, bladder or bowel issues, paralysis
Constant hiccups,
frequent nausea and vomiting
NMOSD can look like MS
Multiple sclerosis (MS) and NMOSD are both autoimmune diseases that affect the central nervous system, although NMOSD is far less common. MS and NMOSD can have similar symptoms and NMOSD can be mistaken for MS; in a study of patients with NMOSD, almost 43% were initially misdiagnosed with MS.*
I’d suspected something wasn’t right with my MS diagnosis for some time, but getting confirmation that my gut feeling was right all along was still hard to believe. I was told that I am lucky to be alive and as able-bodied as I still am.
— Patient with NMOSD (name withheld by request)
*The wrong diagnosis of MS became less common after AQP4 antibody testing became commercially available in 2005 (20% vs 54.2% before 2005).
I’d suspected something wasn’t right with my MS diagnosis for some time, but getting confirmation that my gut feeling was right all along was still hard to believe. I was told that I am lucky to be alive and as able-bodied as I still am.
— Quotes are composites based on actual experiences of real people living with NMOSD.
NMOSD can look like MS
Click the tabs below to toggle between the signs and symptoms of:
- Vision changes
- Blindness
- Spasms
- Limb weakness
- Numbness
- Pain
- Fatigue
- Paralysis
- Loss of bowel/bladder function
- Hiccups
- Nausea
- Vomiting
- Vision changes
- Blindness
- Spasms
- Limb weakness
- Numbness
- Pain
- Fatigue
- Paralysis
- Loss of bowel/bladder function
- Hiccups
- Nausea
- Vomiting
* Symptoms in red type are associated with that specific disease
Talk to your doctor about a diagnostic test called AQP4. This could make all the difference in your treatment.
Testing for NMOSD
An anti-aquaporin-4 (AQP4) blood antibody test can make a big difference in the diagnosis and monitoring of NMOSD. Almost 3/4 of patients with NMOSD test positive for anti-AQP4 antibodies, and these antibodies are not present in patients with MS.
A simple blood test for the anti-AQP4 antibodies associated with NMOSD is a really important part of an accurate diagnosis.
Download a PDF to learn
more about how NMOSD
affects the body
† In addition to a blood antibody test, a doctor’s diagnosis of NMOSD is based on a patient’s medical history, physical exam, and a variety of specialized tests. Some of these tests may include an examination of cerebrospinal fluid, spinal taps, magnetic resonance imaging, or computed tomography scans.
Are you ready to talk to
your doctor?
See what you can do to help reduce
the risk of NMOSD relapses.
Getting a proper diagnosis as soon as possible is essential to help reduce the risk of further attacks. Discuss management options with your doctor.