Central Nervous System Vasculitis: All That ... - Vasculitis UK
Central Nervous System Vasculitis: All That Glitters Is Not Gold
Interesting article, brings back memories of diagnosis of my Cerebral vasculitis but fortunately I avoided the brain biopsey, I was diagnosed with MRI and angiogram. My initial CT didnt show anything I believe? Has anyone else with Cerebral Vasculitis had a brain biopsey? I was treated with high dose Prednisolne (for 2 years) and intavenous Cyclophoshomide (for about 7/8 months) and have now been on Mycophenolate for 3 years?
Hello there. I have only just discovered Health Unlocked and am still reading the older posts on Vasculitis. However, I had a brain biopsy 2 years ago at John Radcliffe because this was the only way to determine which condition I had. Within 2 days the result was confirmed as Cerebral and CNS Vasculitis. I still have a small scar on my forehead but it doesn't worry me, especially since the biopsy-proved diagnosis was fundamentally important to selecting the treatment. The very next day I was receiving IV treatment at Nuffield Orthopaedic Centre. All my thanks went to Dr Jane Adcock and Prof Luqmani for going the extra mile.
My experience was similar to yours - many of my blood results were unremarkable and MRI inconclusive. It was the angiogram that showed inflammation. There was no need for a biopsy I guess, I don't think it was every mentioned. Treatment has been steroids and cyclophosphamide for the past 4 years. I've recently managed to come off the steroids and am monitoring how my brain is coping.
As I understand, the brain biopsy is the only way of getting a proper accurate diagnosis. Like a kidney biopsy, it's not quite as gruesome or destructive as it sounds. Sadly, because CNS vasculitis is so rare, it is relatively under-researched. I do know Prof Luqmani has a special interest in it. It would be interesting to know what role, if any, there is for Rituximab and other similar "biologics" in CNSV.
John
Cerebral Vasculitis , major stoke 39yrs
Causation of vasculitis.
Could this be Vasculitis?
Asthma and vasculitis
Vasculitis and Total Hip Replacement
