Community Views: Misdiagnosis

Because neuromyelitis optica spectrum disorder (NMOSD) is a rare disease, misdiagnosis is common. It can take months or years to get an accurate diagnosis. Symptoms often overlap with those of more well-known diseases, delaying the process. For many people, the journey to diagnosis feels exhausting and discouraging.¹

Neuromyelitis-Optica.net has a forum in which members of the community share the challenges of misdiagnosis. It is a place to connect and feel less alone. Recently, community members engaged with the prompt “Being misdiagnosed can be painful and frustrating. Were you misdiagnosed before you were diagnosed with NMOSD?”

Several members shared about their journey with misdiagnosis.

Misdiagnosis as multiple sclerosis

The most common misdiagnosis mentioned was multiple sclerosis (MS). Many members shared going through diagnosis and treatment of MS. It took time for their doctors to conclude that an MS diagnosis did not fit their symptoms and that MS treatments were not helping.

“I was misdiagnosed with MS four years before getting my NMO diagnosis.”

“I was misdiagnosed with MS from 2002 to 2020. It wasn’t until I changed neurologists that I discovered it was NMO and started Rituxan treatment.”

“YES. First, it was MS, but then it changed after a back-to-back attack to the first eye and then the other. I was told it was NMO, lupus, and fibro. Then a new neuro said no, it’s MS. My next neuro supported the MS rediagnosis.”

Multiple misdiagnoses

One respondent shared the many different diagnoses they endured. It was a multiple-year process that involved seeing many specialists before receiving an NMO diagnosis. This respondent received treatments that negatively affected their body. Misdiagnosis took a toll, physically and emotionally.

“My first TM (transverse myelitis) attack was awful in and of itself, but then I went down the road of misdiagnosis for years: Lyme disease, migraine, psychogenic (in my imagination), vertigo of unknown cause, etc. I bounced from specialist to specialist until an ophthalmologist correctly diagnosed an optic neuritis attack, which led to an MS diagnosis.

I failed the first MS therapy quickly. Then they tried Tysabri, the strongest MS drug at the time, and I progressed in a few months to losing my ability to walk or use my hands.

I had so many symptoms that I didn’t understand. I bounced from neurologist to neurologist until one expert figured it out. He rushed me right to the hospital from his office for plasmapheresis treatment and saved my life. That was 2010. I have been living with NMOSD since then.”

Misdiagnosis due to lack of hospital resources

“I was misdiagnosed at my hometown hospital but luckily flown out to a larger city hospital that diagnosed me with NMOSD after further tests.”

Thank you

This community appreciates everyone who shared their experiences with misdiagnosis. It helps to know that many members have had a similar journey to NMO diagnosis.

What is your story?

Did you have a difficult journey to diagnosis? What misdiagnoses did you endure along the way? Please join the forum and share with us! Navigating a rare disease is tough. Hearing and sharing stories helps everyone feel less alone.