Patient Comments: Neuromyelitis Optica - Symptoms

Question:

What were the symptoms of your neuromyelitis optica? Submit Your Comment

Comment from: NotMS, Female (Patient) Published: June 02

I had a major headache for about 4 days, then lost vision in my right eye. I was hospitalized and found I had optic neuritis (neuromyelitis optica). MRIs were normal. I was treated with 1,000 mg of steroids through IV for 3 days, then oral steroids. Vision came back a little, but vision was never the same again. This was 3 years ago. It has recurred about 7 times since, the last time when I left the hospital, I was back in 2 days later, unable to walk... at all.

Comment from: I'm still here, 45-54 Female (Patient) Published: March 17

I have neuromyelitis optica, I got diagnosed in 2007. No one knew what it was. They though it was multiple sclerosis, then transverse myelitis. I almost died in the hospital. Then I met a wonderful doctor who knew what I have. Now I am being treated with Rituxan and steroids though an IV or infusion. My remission has lasted from six to nine months. I also take other medications to give me a better quality of life. I just want others to know, not to give up, there is help out there. You have to demand tests and treatment. I can walk now but with a limp. The spasms are under control and my vision came back.

Comment from: alienluvr, 35-44 Female (Patient) Published: January 09

I have reoccurring neuromyelitis optica. I am beyond sick all the time, in remission now, but don’t know for how long.

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