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    Living with CNS Vasculitis / Lupus
    avatar
    s_teward posted:
    I have been diagnosed with cns vasculitis, and the doctor does not know if it is related to lupus, for which I have been diagnosed.

    my blood test all come back within normal limits, showing positive ana/lupus and the spect scan comes back showing extensive vasculitis inflammation, with 7th and 8th cranial nerve inflammation. Is this all related?

    what kind of life am I looking at in the future?

    will my headaches be a part of my life?

    how do I know when I vasculitis is in remission, and how will I know when vasculitis is flaring, when so few symptoms show in blood test?

    thank you for your time.
    Reply
     
    avatar
    seejayd responded:
    Feeling a little disappointed..was hoping to get a response.

    is there anyone with similar experience?


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