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Thread: New to this board and new to NMO

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  1. 02-15-2013, 09:37 PM #1
    Mariloudy
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    Mariloudy is offline
    Join Date
    Feb 2013
    Location
    United States
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    New to this board and new to NMO

    I would appreciate any advise on NMO. I was dx with MS in 1974, started Betaseron in '94 and that medication basically slowed the progression of the disease. I am legally blind after many bouts of ON. Since moving to CA the neuro here wanted me to take the blood work for NMO, something I never heard about when I lived back East. My antibodies were off the charts so I am being referred to a specialist at UCLA. I think the treatment option that is being considered is daily prednisone and Cellcept. I was told to stop the Beatseron because my last MRI (a few weeks ago) showed active lesions in brain & spine.

    Has anyone gone through this? What and how did the specialists determine if you had/have MS or NMO.

    Believe me it is hard for me to wrap my head around not having MS after 40 years and being treated for another illness that is so similar but doesn't respond to any of the MS drugs?

    I could really use some advise if anyone has any to give.

    Thank you
    Marilou
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  2. 02-26-2013, 05:01 AM #2
    Grace53a
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    Grace53a is offline Registered Member
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    May 2008
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    Pennsylvania
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    Hello,

    I have had seropositive NMO since 2005. For the most accurate and current information, please visit the Guthy-Jackson Charitable Foundation for NMO Spectrum Disorders Research. They have the most comprehensive library of NMO articles in one place, on the web. There is also a Patients Community within the GJCF called Spectrum.

    NMO is not MS. It's antibody and B Cell mediated. While it's true that NMO has symptoms in common with MS in the beginning of the disease course, the two diseases diverge widely with the passage of time. I do hope that you'll visit the GJCF site. It's impossible to get a good understanding of NMO at an MS forum. I certainly don't mean that as a criticism of MS World---it's one of my favorite sites.

    Grace (NMO+ since 2005)
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  3. 03-02-2013, 07:17 PM #3
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    22cyclist
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    22cyclist is offline Registered Member
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    Thank you Grace!

    Lisa
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri
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