People have been diagnosed with multiple sclerosis for decades. With the invention of the MRI machine came more and more people being diagnosed much earlier than they used to be over twenty years ago. Over 2.5 million people have been diagnosed with MS and the majority of them with relapsing remitting MS (RRMS).
This term is outdated as research into MS has become more extensive and Dr Patricia Coyle, Founder and Director of Stony Brook’s MS Comprehensive Care Centre said at the Annual Meeting of the Consortium of Multiple Sclerosis Centres (CMSC) said “MS does not remit.”
People MS may feel that in between relapses they are fine not to take any medication. I was one of these people. My whole life I never took medication for anything unless I really had to and I thought I would be fine. I learnt the hard way when I had a very bad relapse that I needed to be taking the medication my neurologist had recommended and have been taking it ever since.
A patient may feel fine in between relapses but it has been found that the disease “goes on silently damaging the tissue of the central nervous system.” Medication may slow this process down.
Dr. Coyle prefers to rename RRMS to “Relapsing MS” as the “disease doesn’t burn out, it does not remit” and patients diagnosed with MS will understand that they will always have the disease it’s just that there will be times when they get worse as in a relapse.
To achieve this change however will not happen overnight. Dr Coyle suggested “that it could start with the National MS Society in the USA. From there, I see it going to the International Federation (MSIF) and to MS societies and associations thought the world”.
I, for one would welcome the change. As serious as my diagnosis was and I didn’t think that I needed to take medication. I thought my body would look after itself but of course it was attacking itself. With the name change, hopefully more patients would understand the seriousness of their diagnosis and take their doctors’ advice to take medication. Sometimes we don’t always heed our neurologists’ warnings about getting in front of MS because we think we’re going to be fine.
As severe as my relapse was fourteen years ago, I recovered but some patients many not be so lucky.
Vivian was diagnosed with MS in March 1999, although symptoms began in 1995. I previously worked as a financial adviser but had to retired due to the worsening of my symptoms. On the positive side, more free time allows me to work on my writing. I am 43 years old, married with two beautiful girls, aged 14 and 11 and reside in Australia.