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Vasculitis UK
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Possible CNS vasculitis

Dear All,

I’m still struggling for a diagnosis. On Friday, Jan 12, I had a lumbar puncture. My glucose and protein levels were normal, but am waiting for full results (oligoclonal bands). They’re also looking for MS or Lymes. As I stated in a previous post, several months ago I tested positive for C-ANCA (not PR3 or MPO), ACE, ANA, C Reactive Protein, and 1,25 Dihydroxy vitamin D (sometimes linked to sarcoidosis). Dr Robert Spiera in New York is overseeing my case; he ran clinical trials for Rituxan.

I haven’t had MRA. However, two brain MRIs (1.5 years apart) showed multiple scattered T2 Flairs in the cerebrum, which isn’t considered abnormal for someone my age (56).

Can anyone shed some light?

Thank you in advance for listening and sharing. This forum has been invaluable, with many brave folks. 😊

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