Sequence Never Shortened

There approximately 100, 000 people in the UK with MS, but despite it being the same condition, everyone experiences it differently.

For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern. For everyone, it makes life unpredictable.
MS Society

Once diagnosed, there is a huge temptation to browse the web trying to get an idea of what will happen to you. However, because everyone experiences it in a different way, you are just left with averages, possibilities and maybes. As an example, the average number of relapses is approximately 1 per year – however you could go many years without any relapses, or have loads of relapses in a single year.

Just after Christmas, I had a follow-up meeting with my neurologist to discuss the condition and possible treatment. Treatment for relapsing remitting MS involves regular self-administered injections which, on average (that word again), reduces relapses by a third and appears to reduce their severity. There are some possible side-effects (and of course the inconvenience), but to me it seems crazy to not give your body a helping hand. However, discussing the condition with the neurologist just highlighted this unpredictability (this isn’t a complete and accurate transcript!):

Me: my first two relapses have been mild, does that suggest future relapses are more likely to be mild?
Neurologist: no – it is luck of the draw as to where and how severe damage is.
Me: both relapses so far have been loss of sensation, does this suggest future relapses are more likely to be loss of sensation?
Neurologist: no – sensory symptoms are most common, and it is luck of the draw as to where damage occurs.
Me: I have had two relapses in the last six months, does that suggest anything regarding the next six months?
Neurologist: no – you might not have another relapse for years, but equally you could have many relapses during the next year.
Me: thanks. You have really helpful.

Of course I didn’t really expect any answers. In a way not knowing what is going to happen, means that you can just get on with life and deal with each incident when it occurs (there are much worse neurological conditions where the path and end result is the same – that strikes me as something much harder to deal with!)

As if to test this, my unpredictable MS chose to throw at me my worst relapse yet just four days after my appointment. Within three days most of my body below the neck had loss of sensation, particularly both hands. Considering my work and leisure time involves computers – losing the ability to type or use a mouse was a massive shock. To be honest, for the first few days I started slipping into a downward spiral. If it can affect me this much so soon after diagnosis, what the hell is going to happen in the future?

Fortunately, thanks to advice and support from my girlfriend and some folk on twitter, I managed to pull myself together and started investigating how I could overcome the problems. I now have a very fetching coloured early learning keyboard with big keys (it is a rant for another time about the cost of any product targeted at the disabled – the same non-coloured special needs keyboard was five times the price) and I have started using Dragon voice to text software (in fact this blog is being written with it!).

I am still struggling with fiddly every day tasks involve my hands, but at least I can still work and do most of the things I enjoy. I am fortunate that there are tools available to me – it is easy to see how difficult it would be for people in different professions, where there are no tools or aids. I have also just started a course of high dose steroids, which should begin to ease symptoms (and ultimately most symptoms will disappear eventually when I remit anyway).

Living with MS has been described as being a bit like going on a rollercoaster blindfolded – you have no idea what’s coming, you can’t get off, and sometimes it is going to be scary and sometimes a relief. I just need to take it bit by bit, and deal with the now and not what might be ahead. It’ll be unpredictable, but then life is unpredictable!

There approximately 100, 000 people in the UK with MS, but despite it being the same condition, everyone experiences it differently. For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern. For everyone, it makes life unpredictable. MS Society Once diagnosed, there is a huge temptation to browse the web trying to get an idea of what will happen to you. However, because everyone experiences it in a different way, you are just left with averages, possibilities and maybes. As an example, the average number of relapses is approximately 1 per year – however you could go many years without any relapses, or have loads of relapses in a single year. Just after Christmas, I had a follow-up meeting with my neurologist to discuss the condition and possible treatment. Treatment for relapsing remitting MS involves regular self-administered injections which, on average (that word again), reduces relapses by a third and appears to reduce their severity. T