Provisional diagnosis of Vasculitis - Vasculitis UK

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Provisional diagnosis of Vasculitis

Sima1952 profile image
8 Replies

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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Sima1952 profile image
Sima1952
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8 Replies
PatriciaAnn profile image
PatriciaAnn

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.

Sima1952 profile image
Sima1952

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

John_Mills profile image
John_MillsVolunteer in reply to Sima1952

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

Sima1952 profile image
Sima1952

Hi John & Susan

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

Sima

John_Mills profile image
John_MillsVolunteer in reply to Sima1952

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

Susan

John_Mills profile image
John_MillsVolunteer in reply to John_Mills

But please ring soon as John can help...

Wellsie profile image
Wellsie

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!

Wellsie profile image
Wellsie

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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