Patient Comments: Neuromyelitis Optica - Experience


Please describe your experience with neuromyelitis optica. Submit Your Comment

Comment from: Cinfin, 25-34 Female (Caregiver) Published: October 18

My daughter was misdiagnosed for a couple of weeks. She was finally diagnosed with neuromyelitis optica (NMO) and that was in 2012. She has the relapsing type. The NMO flares were so bad that they left her paralyzed from the waist down. Her NMO was well controlled with IVIG and Myfortic. However, she also has a neurogenic bladder and bowel. She is always sick with infections from all the immunosuppression. She also now has osteomyelitis due to pressure ulcers. Her quality of life has gone down and she's very sad all the time. We need a cure not just for her but also everyone else with NMO.

Comment from: Hopeful, 45-54 Female (Patient) Published: October 17

I was 39 when I had my first attack of neuromyelitis optica (NMO) and I am now 50. After seeing an eye specialist, I was told it was multiple sclerosis (MS). But, after seeing MS specialist, I was diagnosed with NMO. I have lost 75 percent of sight in my left eye and 30 percent in the right. I have tried any and all medications to slow it down. Azathioprine seems to be what helps me, with some Solu-Medrol IVs when needed. I have some weakness, but make a point to get up and move every day. Staying positive is the best thing to do and move no matter how much it hurts.

Comment from: Ns, 65-74 Female (Caregiver) Published: September 23

I have been caring for someone with neuromyelitis optica. As many others she was originally misdiagnosed. Originally she lost the use of her legs, with minimum use of hands. Pain best described as electrifying was experienced mainly in legs. She also had loss of vision in right eye. She regained use of hands and legs and regained vision in both eyes, but later lost most vision in the left eye. She was able to function at close to normal rate. Plasmapheresis can often help with regaining eye vision. She took Imuran until recently when she had a flare up coupled with an infection. She now receives infusions of Rituxan. We are waiting to see the effects. She has had a recurring infection. Waiting to see how she will recover. Recovery is slower than the first time.

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.

Comment from: Marioliz, 55-64 Female (Caregiver) Published: April 25

I just lost my wife to neuromyelitis optica. She was misdiagnosed also. Being a care giver is the hardest thing there is. We had been married for over 44 years. I'm so lost. I hope for a cure so no one has to go through this. She was in so much pain, from the bed to the chair and back again.

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.

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.

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.

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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