Very worried: hi I'm Mary. I had a tissue... - Vasculitis UK

Vasculitis UK
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Very worried


hi I'm Mary. I had a tissue mitral valve replacement 2 years ago. Now it seems I have swollen optic nerves, noticed yesterday,after an eye test. I had 4 blood tests, I wasn't told which ones, they are negative apparently. Does anyone have any info on what could be happening. I was told I would have to take high dose steroids after other tests(?) I take Warfarin, beta blockers, blood pressure tabs, I have AF. Thanks

6 Replies

What they have seen at the optician is that the area where the optic nerve joins the back of the eye is pale and swollen. This is due to a poor blood supply that results in there not being enough oxygen supplied to the optic nerve. It is called Anterior Ischaemic Optic Neuropathy (AION for short) when arteries are causing the problem or NAION (non-arteritic ION) when it isn't arteries.

I think they probably suspect you may have giant cell arteritis - there is a forum on this site:

but this can happen without that. The treatment for GCA is high dose corticosteroids to reduce the swelling that is probably causing the problem.

The blood tests they have done probably included ESR and CRP, both signs of inflammation when raised. However 1 in 5 patients with GCA don't have raised blood markers. Do you have any other GCA symptoms? Such as headache, jaw pain when chewing, scalp pain, muscle aches and pains and stiffness, fatigue or weight loss? They don't always occur though, especially in the early stages, and sometimes never appear.

And if it is GCA they suspect - you must be referred to a rheumatologist as an EMERGENCY patient, not just urgently. There are other tests that may need to be done quickly and GP doesn't usually have the expertise to manage it on their own.

in reply to PMRpro

thank you very much. They hv given me an appointment in 7 days. I think I may go into the Emergency dept today. This is very frightening.

in reply to Hidden

I doubt the emergency department can do a lot if you only have the optic disk sign - and no other symptoms at all. But if you DO develop any of the symptoms I described you should go straight away.

Are you in the UK or the USA?


UK. You? I live in Hull. Our docs and nurses are overworked but take each case seriously. If I go they may be able to speed up my appointment instead of my waiting a week. Yesterday I had gone to check up on an eyelift which had been necessary for a drooping lid. I saw a young doctor. Sometimes, I find, they discover things which others don't, a new broom sweeps clean, sometimes they are a little over enthusiastic. As it happens I had already had some symptoms which were strange and was going to make an appointment with my GP.

Hi Passera

I urge you to note everything one of our treasures, PRM, tells you. It is all gold.

I understand your concern. Really. My hubby is unwell at the moment and may be waiting 18weeks for an appointment, to wait one is so quick. Someone is taking you very seriously. I know it will feel like a month, but it really is very quick.

Try aiming to do one thing a day. Repot a plant, watch a box set, get each day done then take someone with you to your appointment who can help remind you of anything you may forget, help remind you of what was said later and can attest to how all this is impacting your life. Maybe what you could do, now what you find difficult.

Note all your symptoms, how long you have had each, what is getting worse, types of pain, anything out of the ordinary.

I hope you can appreciate how lucky you are to get such a quick appointment. BUT if you get a lot worse, follow PRMs advice.

Hang in there.

Let us know how you get on Passer

You are welcome here any time.

We are all rooting for you

Best wishes


in reply to Footygirl

Thanks Footygirl. I'm taking all on board. Till Friday, when I go back, I'll just get on as if nothing has happened, taking note of everything. That's how I face worries. I'm so sorry about your husband waiting so long. I don't know where you are, here the doctor, if worried, makes sure the patient is seen within 2 weeks. One can go privately, half hour with specialist £120. Then tests are done on National health service. I will let you know how it goes. Everyone is so very kind 😘

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