Patient Comments: Neuromyelitis Optica - Diagnosis

Question:

How was your neuromyelitis optica diagnosed? Submit Your Comment

Comment from: Bethanne, 45-54 Female (Patient) Published: September 04

After many emergency room visits only to be told that they would only give me medicines which I didn’t want, it took a doctor to do a spinal tap and that’s when I got my diagnosis of neuromyelitis optica.

Comment from: lupiecat95, 55-64 Female (Caregiver) Published: March 13

My mother had her first attack of Devic's disease (neuromyelitis optica) this past January at the age of 63. She was in ICU for several weeks. She was on a ventilator for 3 weeks, then had a tracheotomy and is now on a ventilator again as of 3/9/14. Hers started with vomiting, then hiccups. She had numbness of her legs and then she started having problems breathing. After several days of trying to diagnose her, my mentioning to her doctor that several family members had autoimmune disorders (her sister and I both have lupus), they started researching and found that she had Devic's. She was on mega-doses of steroids for about a week with very little change. Plasmapheresis helped her a lot more. She still can't feel her legs and has extreme weakness in her left arm. The weird thing is that she's not having problems with her vision (thank goodness). Her prognosis is a nursing home at least until they can remove the tracheotomy. I wish I could get her somewhere she could be treated by doctors who knew about this disease because her doctors had never heard of it.

Comment from: Nancy, 65-74 Female (Patient) Published: July 19

I have transverse myelitis. They are still trying to rule out multiple sclerosis but it's definitely leaning towards neuromyelitis optica. Not sure what to expect but I'm definitely stressed and hoping for a final diagnosis.

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