NMOSD and Misdiagnosis
Being misdiagnosed can be painful and frustrating. Were you misdiagnosed before you were diagnosed with NMOSD?
My first TM attack was awful in and of itself but then I went down the road of misdiagnosis for years, Lyme disease, migraines, 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 a 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.
We are SO happy to hear that after a long road you were finally properly diagnosed and got onto an effective treatment plan. I hope you find this community to be helpful as you continue to navigate through life with NMOSD! We are here for you! Wishing you all the very best. Warmly, Kailah (NMO Team Member) 💚
Thank you.
YES. First it was ms. But then it changed after a back to back attack to first one eye then the other. I was told it was nmo, lupus and fibro. Then a new neuro said no its ms. My next neuro supported the ms rediagnosis after only hearing me explain..
Hi, I am so gla that things are finally okay for you for the line of treatment you are receiving. the repossession and consequences of being misdiagnosed are so relatable. Medical gaslighting is such a common thing. We are all here for you. This community is such an amazing place to share our experiences. Noor (Team Member ) Hi, I am so gla that things are finally okay for you for the line of treatment you are receiving. the repossession and consequences of being misdiagnosed are so relatable. Medical gaslighting is such a common thing. We are all here for you. This community is such an amazing place to share our experiences. Noor (Team Member )
I was misdiagnosed with MS four years prior to getting my NMO diagnosis.
It's frustrating how often we hear about misdiagnosis with NMO and MS. I'm sorry you had to go through 4 years of the wrong diagnosis, that sounds so confusing. This community is always here for you 💚 Warmly, Jaclyn (Team Member)
