Community Forum: Advice for someone who is newly diagnosed with NMO

I wish someone would have told me I wasn't going to die within five years as you read online on some websites! Also, I wished they would've gone over what kind of symptoms I could expect after steroids, Plex, and rehab. Had I known nightly electric shocks running through my legs in conjunction with horrifying, thrashing out of control, excruciating spams were a possibility I would've been more prepared to go to the ER rather than enduring that hell and waiting over the weekend before seeing my neurologist. And that it does get better! Once I started my Soliris infusions, months after my attack, a kind nurse told me I'd start to see a difference in about six months. She was right and she's still so nice!

For me things that someone would have told me when I was first diagnosed
1. I will not die in 5 years, in my case my mom and my aunt told me, that doctors informed them they can't say how long will I live, I don't have much time left (seriously).
2. you are not alone. Again I was told it's a rare disease with no cure and you are "those very few people".
3. There are communities available. So reach out. Me being in India just made it a lot lot lot worse. So a community like this is my best friend and gave me hope to live ( I owe it to this website)
4. All the people around us who were telling me to be brave, STOP they should have told me it's okay to be scared, give yourself time, and cry if you have to.
5. Also doctors won't tell you most of the things like I wasn't asked to control my diet, and I did that at a very later stage, which had a direct impact on my recovery. Also, I was never told that when Rituximab and steroids will settle, by the body will react very differently. Most of the time they are clueless. ?My doctor told me I will never be able to walk properly and will always be on an assistive device. Proved him wrong.


Noor (Team Memeber)