Hi all I just wanted to see if anyone is experiencing anything similar to me and how you are coping. I was diagnosed in August 2012. I had a relapse in 2006 but didn’t know what it was at the time, until August I had been completely well with no symptoms at all. Since August I have been slowly getting worse. I am now only just able to get around the house, I am not able to walk outside and have just hired a wheelchair. I live in a house with an upstairs toilet which is very tricky with a loss of bladder control! I can not stand for longer than about 5 minutes, I am tired most of the time and think I am loosing the sight in my left eye. I haven’t been able to work since January and can’t see me returning to work. I have been told this is remitting relapsing MS but the consultant had expected that this would improve when I saw him in December. I don’t have big flare ups and am not in any particular pain but I am getting worse it seems by the week. I am not on any medication and I’m not sure if I should be. Having only been diagnosed in August this is all really new to me. I am normally a really positive happy person but the speed at which I am deteriorating is now getting quite worrying. Also…I enjoy the odd glass of wine or two, do you think this has caused things to get worse?? Any advise gratefully received x
Sorry to hear that you’re having such a horrible time I think you might get more experienced replies if you post on Everyday Living, but fwiw, I once had a 12 month period during which I either had one long relapse or back to back relapses which added loads of stuff to my symptoms and ended in me getting my first walking stick and wheelchair. Thankfully remission finally(!) arrived, a lot of symptoms improved and I’ve been really stable since then. I think, if I were you, I would contact my MS nurse and ask for an urgent review. If you are having lots of relapses, then I would think you need DMDs and possibly steroids too, but first you need an expert to work out if this is relapses or a nasty period of progression and that might mean seeing the neuro sooner rather than later. Re alcohol: there was a large study done a couple of years ago that found alcohol to be good for MS so please don’t worry about it. More than a couple of units a day is a risk factor in some non-MS conditions though, so best not to overdo it. Karen x
Thanks for the advise Karen, really glad to hear that I might see some improvement and a little light at the end of the tunnel. Good to hear that you are stable. I have another MRi in may so that should give an idea of what is going on, it all just seems to be going on for sooo long Great news about the alchol! Jules x