There's an article about primary CNS vasculitis in The Lancet in August 2012 (volume 380, issue 9843, pp. 767-77). It's written by Carlo Salvarani, Robert D Brown Jr, Gene G Hunder. Behind a publisher's paywall of course, though digital copies can be bought from thelancet.com/. I will have a look at it soon. I'm lucky to have access to this journal's electronic version through my honorary research fellowship at Dundee University.
Article in The Lancet (Aug 2012) about CNS/c... - Vasculitis UK
Article in The Lancet (Aug 2012) about CNS/cerebral vasculitis
Dear Vivdunstan,
Do let me (us) know if it's worth further investigation please. I'm sure a number of us would be interested.
Thanks for 'flagging' the article anyway
AndrewT
It's an interesting article, and will be informative for medics, and raise the profile in the UK of this particularly rare form of vasculitis. But I do have some concerns. It doesn't describe the full range of symptoms (including the quite horrific bladder incontinence lots of cerebral/CNS vasculitis patients in this group report) and where it does describe things it often does so in a way that might make sense to medics more than to patients looking to understand what they are going through (understandable though, given the paper's audience). Also it portrays a rather optimistic picture re diagnosis, saying 75% of patients are diagnosed within 6 months of first problems. I do wonder about the 25% though. This disease is easily mistaken for other things, including misdiagnosis which can run for years. It gives quite a lot of treatment information, though less for the cases which resist conventional therapy like Cyclophosphamide. And it gives an awful lot of information about the underlying disease process, and attempts a useful categorisation of disease variants. It also gives a lot of information about a more benign related disease, though arguably a bit much for me: I'd like to see more about the more aggressive tricky-to-control diseases!
So to sum up it's good, and will raise knowledge among medics, but I have some concerns, and wouldn't recommend it as reading to patients so much, unless you are really keen to know what the latest literature says. Even then expect not to follow it all, especially the more technical/biologic bits. Interesting though.
thanks for the summary