CNS vasculitis - I'm new here

I was diagnosed with retinal vasculitis in 1987 when I was about 20. No one knew much about vasculitis back then. I took high doses of prednisolone over an 18 month period and when I stopped getting more blind patches in my eyes we all thought that I had been cured. The blind patches were small, and there was no internet back then, so thankfully I moved on with my life without knowing that one goes into remission rather than being cured of this disease.

By 2012 I had rich and full life having studied law and science in Melbourne and having received a scholarship to do a masters in law in England. I had also been lucky enough to do an associateship (clerkship) with a senior judge in Canberra. I had been a barrister and a solicitor for more than two decades. And, most important of all, I had a husband and three gorgeous children aged 7, 9 and 10. It was then that I was diagnosed with Central Nervous System Vasculitis by a Professor of Immunology in Sydney.

Just to name a few of my symptoms, I have memory problems, word finding difficulties, many and varied types of headaches, teeth and jaw pain (I have split two molars by clenching my teeth to relieve the pain), tingling and numbness on my face, hands and feet and later over my whole body (worse on the left), spontaneous bruises on my legs, spontaneous painful cracks in my toes and fingers, various vision issues (including people turning pixilated, TV that looks like it has jumps in it like an old super 8 film), inability to perceive depth, unco-ordination, tinnitus, problems recognising people I know and wrongly thinking strangers are people I I drop things, I sometimes just fall over and I have the occasional hallucination.

I had to retire from work as a barrister in 2014 and I am now a stay at home mum in Sydney, Australia. Strangely, in some ways I feel lucky to have had a relapse as I am spending long, happy days with my children and my husband which I would not otherwise have had.

I have not responded well to most of the medication my doctors have trialled on me, which includes imuran, methyltrexate and mychophenolate mofitel. I no longer take them and am now on intravenous gamma globulin which is given in the oncology day ward in hospital once every four weeks. I am also still on prednisolone but after losing 10% of my bone density in the space of 12 months, I now have a prolia injection every 6 months. I am holding pretty steady on this treatment, but my doctors are no longer hopeful that I will achieve remission.

So, I am grateful every day when I wake up and am able to get out of bed to make the kids breakfast and school lunches and send them on their way. My husband says that I spoil them if I give them a lift when they are running late. But surely one of the great joys of life is spoiling ones children when one is able to.

3 Replies

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  • Nothing much I can say that doesn't sound trite - but I wish I could give you a proper hug not just a virtual one.

    "But surely one of the great joys of life is spoiling ones children when one is able to." - I think so yes, especially when you are faced with what can only be a rather uncertain future in many things and, one suspects, driving them places will be limited in the future.

    Mind you - there are people in this world who must be improved by being turned pixelated?????

    However - may there be many days when you CAN spoil them by helping them catch up their lost time. xxxxxx

  • I'm concerned about your comment about 'pixilated' vision. It sounds just the same as the problem that I had that before I was diagnosed with Large Vessel vasculitis.... and I left it for far too long because I went to see an optician and not a doctor. The optician dismissed it a a funny sort of migraine so I didn't follow it up.

    Later I was told that it was a dangerous symptom as it can lead to permanent vision problems. Now I'm on steroids (5 mg) and rituximab and the pixilation has gone, probably because my carotid arteries are now nearly free from inflammation. But I do think you should check it out and see whether you are on the correct drugs....

    And I spoil my grandchildren now, as well as my children! So glad to be here to do so.

  • Kate,

    I have read your post and there are some similarities with what I have been experiencing. I have recently put my first post on this morning titled 'Polyarteritis Nodosa - awaiting diagnosis'. I wondered if you flick through it and see if you have experienced any similar symptoms? Send me a message if anything is linked...

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