Patient Comments: Neuromyelitis Optica - Experience

Please describe your experience with neuromyelitis optica.

Comment from: CH0812, 55-64 Female (Patient) Published: November 23

I was diagnosed with neuromyelitis optica (NMO) in 2000/2001 after several misdiagnoses, including multiple sclerosis (MS). My last severe attack was in 2011, I was admitted to the hospital and given Solu-Medrol but it did not restore the vision that was affected. I'm blind in my left eye and my right eye's vision is impaired. This is a culmination of 4 or 5 attacks in the course of 11 years. I am now on Rituxan whenever my blood tests warrant it, 1 gram 2 times within 2 week period. I have blood work every 3 months. My final diagnosis was NMO caused by lupus, which I was diagnosed with in 1978. I was in remission when the NMO symptoms began.

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Comment from: Sohi, 35-44 Male (Caregiver) Published: February 24

My brother in law is suffering from Devic's disease (neuromyelitis optica). The doctors said there is no cure, and he is very lazy to help himself and to move. Now his condition is much worse than before. His vision is not very good. We treated him with many doctors, even the herbal ones but no result. At the moment he is like a stick lying on the bed unable to move.

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Comment from: Mom of devic patient, 19-24 Male (Caregiver) Published: October 21

My son has neuromyelitis optica (NMO). He has only had one attack and some damage to his eyes but ever thankful to his doctors. His treatment is Rituxan by IV twice a year. And it has been working, no relapses.

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Comment from: Gaynor, 55-64 Female (Patient) Published: June 24

I was first diagnosed with lupus about 4 years ago. Twelve months later I went blind in both eyes. I had IV steroids, then oral, and then Intragam. I have had attacks every few month with loss of sensation, weakness and neuromyelitis optica. Eighteen months ago I lost use of right side. I have recovered somewhat and have just had another flare up but not as bad.

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Comment from: ommen, 65-74 Male (Patient) Published: October 18

I have optic neuritis for the third time since February this year. I have been treated with intravenous and oral steroids. Now all clinical results are negative.

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Neuromyelitis Optica - Symptoms Question: What were the symptoms of your neuromyelitis optica?
Neuromyelitis Optica - Treatment Question: What was the treatment for your neuromyelitis optica?
Neuromyelitis Optica - Prognosis Question: What's the prognosis for your neuromyelitis optica?
Neuromyelitis Optica - Diagnosis Question: How was your neuromyelitis optica diagnosed?

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