MS & Me

When I was first diagnosed with MS, I was given information on a number of drugs. At the time I felt that being diagnosed in my early twenties would have to work to my advantage as I would get on treatment faster and have it working in my system for a long time. As my MS was extremely active in the beginning, I felt the faster I could get on treatment the better. I looked through pages of booklets on treatments and read though clinical trials that were offered to me. One looked very appealing, but I felt that at that time I needed to be on something solid that had been tried and tested. After much research and reading, I decided to try Tysabri and went to my MS nurse with this decision. It seemed to me to be the gold star drug available for MS.

I’m sure Boris Johnson didn’t have me in mind when he was making London more accessible. More like the 20 million spectator journeys he had to facilitate during the 2012 Olympic Games! Anyhow, I was very happy to reap the benefits of his logistical nightmare when I was planning a trip to visit a friend (who also has MS) in Jolly Old London Town.

People waiting, wondering, dreading, hoping

Whenever I meet a fellow MS-er, I ask them their name, where they are from and what meds they are on. It doesn’t take long to move on to the benefits of their prescribed drug and if they outweigh the side effects brought into their everyday lives. Some side effects and limitations of a drug are easy to swallow. I had no bother cutting out the operation of heavy machinery. Others side effects are so obvious- they make me smile. For example, my sleeping tablets warn me that they cause drowsiness. Who knew!!!! Others are not so simple! 

What is this MS ‘Fatigue’ people talk about and why does it get the blame for so much? This week Emma Rogan takes a closer look at its affects, what remedies are available and how she manages her daily visitor 

'Lucina has just turned fabulous forty, works full time as an arts officer with a local authority. She is a keen gardener, who battles to keep an acre in Poppy Cottage under control. Lucina has 6 year twins, Leon and Mya. Diagnosed with RRMS in 2011'

The View from Here: Opinions on a Life with Multiple Sclerosis

My white blood cells have been on the naughty-step for more than a month now. The first blood test said they were low. The next one said that they were EVEN lower. I gave another sample last week and haven’t heard back yet. I should really call the hospital but I just remembered that I was going to defrost the freezer today……  This ostrich-like behaviour can be translated to “I really want to stay on this new MS drug but I am scared I will be taken off it if my white blood cells don’t cop on”. On the up-side, my household appliances have never had so much attention.

Willeke moved to Ireland from her native Belgium in 2002. Diagnosed in 2005, she was intent on being a voluntary advocate for people with MS after her retirement 4 years later. Willeke has been described as inquisitive, tenacious and very independent. She hopes to keep on writing when her eyes permit her to, and to help others see sense in what is often MS-nonsense.