Vasculitis UK

So my bloods have come back that I have tested positive for Anti-neutrophil cytoplasmic antibody

Could someone tell me what this means, I have ongoing issues with severe pins and needles/numbness, b12 deficient, iron deficient, reoccurring respiratory infections, I have also had problems last year with losing my sight in one eye for several minutes and visual disturbances, and also been mild neutropenic and anaemic in the last year. GP referred me to neurologist who did a physical exam checked my reflexs and eyes, and then said in light of my symptoms and low B12 he would write to my doctor for me to be started on B12 as he thought this is the likely cause. He also ran some tests, of which I have no idea. So my GP hasn't heard from neurologist, but has had the blood work come back and he said that I tested positive for ANCA but in light of the other tests said its not relevant. Could anyone tell me, what testing positive for these antibiodies means in light of my symptoms?

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Hi ic24,

This is a link that explains all about ANCA

vasculitis.org.uk/about-vas...

Unfortunately it's impossible to say what it means in the context of you and your symptoms, you really need to see a Consultant with experience in diagnosing Vasculitis to work that out.

What I would say is that it's not a routine blood test, the Neuro must have had a good reason for doing it.

The best thing to do is phone or e mail John or myself on the Vasculitis UK Helpline ( my e mail is lynn@vasculitis.org.uk ) and we can talk things through and hopefully point you in the direction of the nearest experienced Consultant.

If your B12 is low then I hope that no one is delaying giving you the loading dose by injection to replace it?

Best wishes

Lynn

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Hi Ic24,

Now that 3 months have passed, I hope your doctor has informed you of the neurologist's opinion. I cannot think why your GP would think the + ANCA finding is not relevant, especially in light of your temporary vision loss, numbness ,etc.

Simply put, a positive ANCA means that your white blood cells ,ie. neutrophils , (normally in reserve to attack an infection), are mistakenly attacking your vascular system or some part of it.; ie. autoimmune disorder and causing an inflammation of your vascular system.

I also had a temporary loss of vision In my left eye while calmly watching TV. I already had a diagnosis of vasculitis and/or polymyositis rheumatica with giant cell arteritis. I was tapering down Prednisone at the recommendation of a specialist in vasculitis; I was down to 8mg. from 16 mg a day when it happened. I took it upon myself to return to 16mg/day and was lucky to get a quick appt. with a neuro-ophthalmologist who did a thorough eye exam, took photos of the back of the eye to look at optic nerves , field of vision tests, and ordered duplex doppler of the carotid arteries and orbits of the eyes; results pending. ( a type of ultrasound test in color).

He also recommended I see a cardiologist b/c of possibility of a small clot breaking off a large vessel near the heart and traveling to the optic nerves.

I don't think temporary vision loss in light of being ANCA positive is irrelevant in any event. While you still might need B12 supplementation, I would see an ophthalmologist or , better yet, a neuro-ophthalmologist , and at a minimum have your carotid arteries checked to be sure there is no inflammation or blockage of blood and therefore oxygen flow to your eyes.

Vision loss, albeit temporary, is not to be brushed aside casually in any event by a GP.I mean no disrespect to GPs, but I agree with the prior writer that you need to find a doctor consultant familiar with and knowledgeable about vasculitis. If it should happen again, go to your nearest emergency room where you would likely be treated with a large dose of Prednisone to protect your vision. Vasculitis can exist alone or in conjunction with other disorders.

If I may ask, what has happened in the last 3 months? Good luck!

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