Has anyone with cerebral vascultis had a second attack of it? After 7 years relatively free certainly from any new neurological symptoms, I have just spent two weeks in hospital after having collapsed losing my left side again as happened 7 years ago? It was all very frightening and i apparently had a Tia? Has anyone with cerebral vascultis suffered a similar recurrence of vascultis?
Milliewin
I fell ill with cerebral vasculitis in 1994 (but only diagnosed in 1997) and had a major relapse in 2004. But my disease never went away fully, so it was more progressive than isolated attacks. We have struggled to stabilise things again since 2004, but eventual Cyclophosphamide treatment belatedly in 2012 probably helped a lot.
My story is online at vasculitis.org.uk/living-wi...
Cerebral vasculitis is particularly rare (1 case per million people of population), often very hard to treat, and can be prone to relapses, where the disease recurs.
Yes I was initially treated with cyclophosphamide in 2008 and for the next 7 years was relatively ok obviously apart from living with the brain damage and a minor relapse again in 2009 and then nothing much until a relapse recently putting me back in hospital for 2 weeks with major steroid infusions?
Are they going to give you any more treatment? Often steroids alone aren't enough. And it is fairly typical with cerebral vasculitis to be on another immunosuppressive drug long-term (in many cases for life) to try to keep the disease under control, and prevent future relapses.
Yes I Am already on immunosuppressive treatment and not sure what's next as waiting to see my neurologist to discuss length ur driving ban this time round as also had seizures!!
From my experience in 1998 the patient is forbidden to drive for 12 months from the date of the last seizure together with administration from Swansea confirming with Doctors this could extend by a few week.
Be on the ball with application. They and the community have to ensure the seizures are controlled. Also it is best to be certain that seizures have run their course, to regain licence and then have more seizures would make licence recovery so much more of an issue.
So sorry to hear you have had a replase. I was diagnosed in 2010 after several TIA's. I've been off of Azaithroprine since October 2015. Every day I worry it will happen again 
I hope you manage to get it under control again and also the seizures, my daughter has them
Many thanks for your reply and yes I know how you feel about the constant worry of something happening again! The dad thing was for the last 7 years I have not had any new neurological symptoms so have not been worrying so much but because of other autoimmune conditions I have been on immunosuppressant treatment. So concerned what has gone wrong again, it's a worry? I am pleased you have come off your treatment!
Sarah
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