Thursday, 20 October 2016

Back by popular demand.........

How has it been 4 years??? Ava was 8 earlier in the week and my last picture on here is of her with a 4 balloon!! She has since started school and is now in the Junior

As for me, I am back by request! Over the summer I wrote a guest blog for a local website and it was published last week
(if you would like a read). I had such positive feedback from friends and family about it, I have decided to try and write more frequently again. I enjoy writing and I enjoy being a support to others whether it is through reassurance or just something for people to enjoy.

There is no time like the present to start writing in this blog again as I have just started a new journey in my MS life. If you have read this blog or know me then you will know that I was put onto Tysabri when Ava was 6 months old to hopefully stop my relapses. For the last 7 years it has done it's job, some would even say that I have maybe even slightly improved BUT a blood test a couple of years ago showed that I was positive to the JC virus therefore I had the potential to contract the potentially fatal brain infection PML. I guess I kind of rode my luck for a couple of years not wanting to leave the safety net of my Tysabri infusion but after seeing my Neurologist last month and him telling me I had a 1 in 100 change of getting PML and the fact my veins were giving up on me and making it harder ti receive the infusion, I have made a pretty big decision and decided to try a different DMD - Flingolimod (Gilenya).

This is a tablet a day, every day, hopefully until they find something better or even a cure (wishful thinking I know!). So instead of spending 2 hours at the hospital every 4 weeks bugging the nurses and hoping they find a vein that co-operates, I now just have to remember to take a pill every morning. As with all medicines there are side effects, I have to be monitored for the first 3 months as there is a part of the eye which can thicken and there can be issues with your white blood cells (not quite sure what though!). I have only been taking it for just over a week and to be honest with you, I feel no different. Which is good, I am not supposed to feel different, I am just glad I don't feel worse. Time will tell and I expect after 7 years, I still have Tysabri in my system. Again, the idea behind the drug is to maintain an MS plateau, not to expect an improvement but hopefully no worse. I have noticed I am a little bit more tired than normal but I do not know if that is work (I am still teaching 3 days a week), being single mummy to a busy 8 year old, as a result of Flingolimod or just generally MS!! I don't think I would have considered it being a side effect unless I had joined a support group on facebook (recommended by my MS nurse) where it seems to be quite a common side effect. The thing is, I know you have to take those groups with a pinch of salt because there are a lot of people on them who think that they are the only person in the world with MS and how can anyone else possibly be worse. Don't get me wrong, you can get some good support from these groups, but just don't take everything to heart.

I have had a rough couple of years health wise (not MS) but lets save that for another day, don't want to bore you too much yet ha ha

Much love,
Em xxx

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An insight to my life with MS