Hi everyone,
I'm not yet diagnosed, and looking for advice in getting a diagnosis.
Last month I had a positive c-anca test (but nothing else of concern in my blood tests). I suffer from recurrent eye inflammation (uveitis and episcleritis), joint pain, fatigue, some neuropathy, headaches, scalp sensitivity, and raynauds. After a lot of research, and hearing about other people's experiences on this forum (thank you everyone who reached out after my last post), I think my symptoms could definitely be anca vasculitis, and I would like to get this confirmed or ruled out ASAP before it develops into anything more serious.
My ophthalmologist is the one who ordered the anca test, and I have an appointment with him this Thursday where I will bring up the test result. But, I'm not sure he will know anything about vasculitis (the test was done as part of a full autoimmune panel, and a different opthalmologist was the one who suggested vasculitis). I've also tried to discuss it with my GP, but she had no idea what the clinical significance of anca was, and said I should wait until my next opthalmology appointment.
I want to ask my opthalmologist for a referral to a vasculitis specialist, but I don't really know how this works! Who should I be referred to? Do I pick a specific person and ask to be referred to them, or do I ask for a general rheumatology referral and hope for the best? It looks like there's a specialist who works at my local hospital, but she's a nephrologist and as far as I'm aware my kidneys are okay (but they haven't been checked), so I don't think a referral to her makes sense?
I'm based in Plymouth, if anyone has experience of being diagnosed/treated around here. I want to be as informed as possible before my appointment next week.
Thanks