I have cerebral vasculitis, in a somewhat progressive form, similar in day-to-day symptoms to multiple sclerosis. I have been ill since 1994, when I was just 22. I was initially misdiagnosed with ME. I was finally diagnosed with cerebral vasculitis in 1997. My disease developed somewhat slowly initially, but has become more aggressive and life-threatening since then.
My main symptoms are mobility, bladder incontinence, memory/cognitive problems, fatigue, and losing control of my arms and legs. However I also have problems with vision, hearing, speech, falling over, headaches (though not until a few years ago), sleeping for up to 17 hours day after day, etc.
I have tried lots of treatments over the years. Cyclophosphamide was initially ruled out for fertility concerns - I was very young, and married, and hoped to have children sometime. More recently it has been ruled out again because I have significant (off the urologist's scale) bladder incontinence (including have to wear incontinence pads permanently), and the consultant fears that that symptom could be worsened. So we try other things. Also cerebral vasculitis has few patients, and few examples to draw on, so we can't be sure that treatments that work for other more commonly found vasculitis forms would work in my case, such as biologics and others.
Initially I was on Azathioprine and steroids. That stabilised things, between 1998 and 2004, but I was unable to come off the Azathioprine, though I managed to get my steroids down to 2.5mg every other day. Then I relapsed hugely in May 2004. Since then we've tried adding Ciclosporin, Mycophenolate Mofetil, Methotrexate, and now Thalidomide. I am currently on 4 different immunosuppressive drugs as well as high dose steroids. My consultant says it's as though we're treating me for cancer. But now I've recently started on Thalidomide we hope to get me off the Azathioprine, and hope to get my steroid dose down a little bit in future, all going well.
When I say my disease is progressive I'm not happy about this, but that's how things have gone for me. Every time I try to taper off the steroids, if it fails I get more brain damage and new or worsening disabling symptoms. And those are permanent. So it's hard to know how else to describe it. For example I didn't get the typical vasculitis headache until a few years ago, until after another unsuccessful attempt at tapering. Similarly my excessive sleeping only kicked in over the last 5 years again. Ditto. And that one is worsening in terms of hours slept a day as the years go on.
I can't work with this disease. I worked briefly, for a year, half-time, between Spring 2003 and Spring 2004, just before my big relapse. But I will never work again. When I fell ill I was a full-time computer science PhD student at St Andrews, and had to leave that, unable to put in enough hours as the disease developed. I could never return to that, and can't even write computer code any more. But I studied a history degree with the OU 1998-2000, partly to take my mind off the day-long nausea I got from Azathioprine in the early years of treatment, and then a part-time Masters at Dundee, and in 2010 I completed a part-time history PhD also at Dundee. So that's a big achievement, and I am currently - very slowly - turning my PhD thesis into more academic journal papers, and having lots of fun in the process.
On the downside, and this is a big regret, I have been unable to have children due to this disease and the drugs I've been on since I was 25. Many vasculitis patients are older, or already have had children. I was caught in a trap. But I've had to accept this, even if it's still difficult at times to cope with. I will never be able to come off the immunosuppressive drugs, and am on some stonkers now (Thalidomide obviously, but also Methotrexate which is used for drug abortions), so pregnancy is never going to happen. I'm not sure it even could. My periods stopped completely for 5 years, due to the cytotoxic cocktail I'm on, and anyway I'll never get off those drugs so it's an academic question.
I also have huge problems reading now, which is particularly ironic because my history PhD investigated historic reading habits. These problems have developed since the late 1990s. It's not so much physical problems managing a book, although that's a problem too - I lose control of my hands a lot due to the brain damage. But the bigger problem is concentrating on a page of printed text. It swims, it's too much for me to read for any length. But I have a Kindle now, and whereas a couple of years ago I wasn't reading at all I've so far managed nearly 70 books in 2011, and am a very happy reader again. The Kindle screen is that bit smaller than a printed book, so I find it easier to concentrate on. And I can adjust the font size and spacing to be optimal.
But I'm happy. Maybe it helps that I have huge memory problems, and each day can be like a fresh start. Or rather each evening, by the time I finally wake up after up to 17 hours of sleeping! I take pleasure in the small things. I have a husband (who I married just before the disease struck) who is wonderful, and has stuck by me through thick and thin. So I have a lot to be thankful for, even if there are downsides too.