Some of you might remember me from when I posted last year, when I was waiting to go in to the National Hospital for Neurology for tests. Back then I was still in limbo, having had a 'clinically isolated syndrome' in November 2009 and being told that my recurring and new symptoms were not MS attacks because they didn't last for long enough, involved the same symptoms as the CIS etc. etc.
Well, the short story is that I finally got my MS diagnosis just before Christmas, after new lesions were found on my MRI scan. The scan also showed faint (older) lesions on my spine, which had never been scanned before, so it's impossible to know how long they have been there.
The tests at the National also showed that I have cardiovascular autonomic dysfunction. This means my circulatory system doesn't always work as effectively as it should, causing bouts of low blood pressure and dilation of my blood vessels. This is porbably what causes the patches of extreme flushing and burning sensations I get in my face, hands and feet. This might also be contributing to my chronic and debhilitating fatigue. They aren't sure. Apparently it is an area in which little is known. Perhaps that means I will become an figure of national interest to neurologists! (If only.)
They are also hedging their bets on whether my previous diagnosis of chronic fatigue syndrome was, in fact, the start of me having MS. They say it's tempting to think that, but they can't know for sure because I had no neurological testing at the time. But it is important to me because it seems relevant to whether/how I treat my fatigue, or even what type of MS I have. I have never recovered fully from the 2 periods of illness I had in 2003 and 2005. Does fatigue count on its own as an MS symptom?
So, some answers but still lots more questions. And although I was fairly sure it was MS, I didn't realise how much of me was still holding on to the hope that by some miracle it wasn't. That it was something which could be easily fixed. That it was something that would go away, get better, leave me alone. Getting my diagnosis is a strange mix of immense relief, fear and grief. The support that comes with the diagnosis makes it easier to deal with - for one thing, my GP no longer thinks I am a hypochondriac! And I realise that, at times, I was even doubting myself and wondering if I had somehow convinced myself I was ill and creating psychosomatic symptoms. It's kind of like getting a stamp of approval that 'allows' me to be ill, to have bad days, to not always cope with everything.
Now I guess I begin the process of learning to live with this condition. I'm finding it hard to decide what language to use about it. Somehow that seems important, as if the way I choose to think and talk about it helps put it in perspective, or defines how I think about myself and MS. I've heard some people call it the MonSter, but that gives it too much power. 'Disease' sounds like I'm contaminated and contagious. 'Condition' sounds a bit like being pregnant! I'm thinking something along the lines of 'companion', but that sounds a bit too friendly. Who knows what I will settle on.
The same goes for my 'symptoms'. That sounds so medical. I'm trying to name them things that are more silly, to take some of their power away, or least to develop a shorthand to use with those closest to me. So my nerve pain is the 'sparkies'. The MS Hug (worst name ever?) is 'the squeeze'. I was going to call poor balance the 'wobblies' and may still, but it does sound a bit like I'm throwing a tantrum! Let's hope I don't have to name too many others for a while.
There is so much to take in when you are diagnosed with MS. So much information, so much to learn, so much to think about. What's most scary is all the uncertainty. But one thing, perhaps the only thing, I am certain of is that I'm not going to let it win. As an old friend of mine said to me, "I may have MS, but it doesn't have me".