Hi, just wondering if anyone has cerebral vasculitis?

I saw my rheumy today who diagnosed me with sjgorhens in addition to my sle, raynauds, crps and possible cerebral vasculitis. My memory has progressively been worsening and he thinks this is the case. He's referred me for an mri of the brain and to attend a memory clinic. Just wondering if anyone else suffers from this?

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  • Hi sezzie,

    Cerebral vasculitis is pretty rare. If you go onto the Vasculitis UK health unlocked site there are a few people there who have cerebral vasculitis and are very helpful.

    Best wishes

  • Hi keyes,

    Thank you for that and I shall check that site out.

  • Hi sezzie,

    As Keyes says, cerebral vasculitis (or CNSV) is pretty rare but there are a few folk with it on the VUK HU page : healthunlocked.com/#vasculi...

    We also have a bit about the disease on our website : vasculitis.org.uk/about-vas...

    And a nice essay from Viv Dunstan who has had the disease for some 20 odd years : vasculitis.org.uk/living-wi...

    Just remember that like all these autoimmune diseases the earlier they are detected and treated the better the outcomes and the less damage that will be done by the disease.

    All the best,

    Richard.

  • Hi RichardE,

    Thank you so much for that, going to check those sites out more.

  • [quote="sezzie" ]... possible cerebral vasculitis. My memory has progressively been worsening and he thinks this is the case. He's referred me for an mri of the brain [/quote].

    Even if you do have cerebral vasculitis it probably won't show up on MRI, only a minority of cases do. Hughes Syndrome [APS] symptoms could resemble cerebral vasculitis , but the treatment is different from vasculitis, ( so it's worth having the blood test for APS ).

    The two different vasculopathic conditions , vasculitis and APS , occur at above normal incidence in people with lupus.

    en.wikipedia.org/wiki/Hughe...

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