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Anyone had NMO thrown their way

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    Anyone had NMO thrown their way

    hello all,

    I haven't been on the board for a long time nor have I been doing much about my MS.

    I finally went in to see a very recommended Neuro, Lilly Jung in Seattle. What a amazing visit. I am actually excited that she threw out Neuromyelitis Optica. Based on fairly benign lesions on brain, MAJOR bilateral optic nerve stuff, bowel and urine probs (sphinchter related), she came back in and had a whole game plan to test for NMO, look at my spine again via MRI, neuropthamologist visit asap and Physical Therapy for strength and safety (had 2 bad falls within the past 2 months).

    ANYWAY - anyone else dealing with this DX of Neuromyelitis optica?

    Thanks!

    Inga

    #2
    Yes, I have had NMO since 2005. It's a very serious disease with serious implications for the patient. Within the first five years roughly 50% (a newer estimate puts it at 62%) of patients will already be permanently blind in at least one eye (often bilaterally), and 50% will be paralyzed in at least one limb. It has a significant morbidity and mortality rate. Although the *initial* brain MRI is usually clean, the research community has known for several years now, that NMO patients do frequently develop brain lesions. Common areas are the Pons, Thalamus, Hypothalamus, and any areas of the brain that have a high expression of Aquaporin 4. Brain lesions cannot exclude a diagnosis of NMO.

    For the most current information, visit the Guthy- Jackson Foundation for NMO Spectrum Disorders Research. They have the most comprehensive collection of NMO scholarly articles on the web.

    The members of the Guthy-Jackson NMO Research Consortium (Mayo, UTSW, Hopkins) announced at the 2010 NMO conference held in Los Angeles, that they are willing to confer with the physician of any NMO patient free of charge.

    Respectfully,
    Grace NMO+ since 2005

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      #3
      Hi Inga:
      Grace mentioned the Guthy-Jackson Charitable Foundation. Their website URL is: http://www.guthyjacksonfoundation.org/. Go there now!

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