Vasculitis UK
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Provisional diagnosis of Vasculitis

On the 2nd Jan 2013, I experienced reduction of vision in my left eye, after having a CT, MRI & LP there was a positive PANCA result with High MPO antibody Titre consistent with Polyarteritis; I am now being referred to Addenbrookes and would like to know what to expect with regards to tests plus actual confirmation of type of Vasculitis

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Hi Sima

Maybe this might be a good starting point. vasculitis.org.uk/about-vas...

You can't do better than having a referral to Addenbrookes.

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Hi Patricia

Thanks for this, have just read this and am scared; I don't know what the referral letter says between the two hospitals - the Polyarteritis Nodosa was from my discharge letter - would you have any idea how long the waiting time is for an appt at Addenbrookes for this type of Vasculitis?

Sima

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The referral to Addenbrookes is not usually very long you will probably hear within a couple of weeks.. it is scary at first.. and PAN is extremely rare but if you would like to talk about this on the phone please contact the helpline vasculitis.org.uk/helpline

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Hi John & Susan

I would like to speak to someone, what would be the best times please?

Sima

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Anytime... as long it is before midnight in the evening and after 9am in the morning x

Susan

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But please ring soon as John can help...

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PAN is never ANCA positive...Which makes it so hard to diagnose. Do you mean PAN or MPA? either way vasculitits is bloody scary but you have a referral to the right place. There are a couple of us here with PAN, so welcome to the group and don't feel alone!

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Ok maybe it is on the very odd occasion... you learn something new everyday :)

adc.bmj.com/content/85/5/42...

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