During MS Awareness Week, CSC Advisor Colette Foster talks about life with the condition.
I was diagnosed with relapsing remitting multiple sclerosis (MS) 11 years ago. I had been suffering from a variety of symptoms – fatigue, falling over and pins and needles in my hands and feet – for some time but, despite doing lots of tests the doctors couldn’t find out what was wrong with me.
This went on for years until I saw a neurologist who decided to carry out three tests all together – blood tests, an MRI scan and a lumbar puncture. The results of the tests finally led to my diagnosis. Apparently you need to do all these test within a short space of time in order to get the diagnosis.
With relapsing remitting MS, you have distinct attacks of symptoms which then fade away either partially or completely. But three years ago my condition changed to secondary progressive MS, which is a build-up of the disability, without any relapses.
While this doesn’t sound too good, in some cases like mine not having as many relapses can be a benefit. But unfortunately my mobility is getting worse – again in some cases MS will level out and you will remain the same for a while which I hope is what will happen with me.
There are all sorts of aids that can help mobility but I find the FES is the best. FES stands for functional electrical stimulation and is an electronic device which you wear. When you wear the FES, two electrodes attach to your leg and then plug into an electronic box. The electrodes send an electric shock down your leg which picks your foot up. A Lynx device, which is attached to your shoe, links it all together and stops you from falling over.
MS is a very frustrating condition as it attacks your nervous system and immune system and not all sufferers have the same symptoms, they vary a lot. When you have a relapse it can cause other problems like nystagmus, which affects the eyes and causes your vision to move when you look at things, nothing is static.
Sometimes steroids help with the relapses and some symptoms are not permanent. Unfortunately my nystagmus has remained and cannot be cured.
There is no cure for MS but there are lots of trials going on. At present, one which sounds fantastic it is a stem cell procedure. With all trials you have to fit the criteria to take part and the different stages the trials have to go through are quite lengthy.
Living with MS is like attaching very heavy lead weights to your feet and legs and then try to move about with them on. The only time I feel ‘normal’ is when I am in water swimming and that just makes you feel really good. The heaviness disappears and you want to spend hours in a pool, it’s wonderful.
You do need support from family, friends and employers which I have 100% from everyone. It makes life so much easier having that support and understanding.