Hello everyone, me again,sorry.
Kinda think I am going a bit crazy due to the way I am feeling these days.
I started Tysabra in December and have found the monthly infusions fine.
For a few weeks now I have not felt so good, had a fall a few weeks ago which I thought was a wee blip but this past week or so my walking has gotten really really bad. I am still at work but on Friday did not think I would make it, my legs just did not want to move, my balance is chronic, walking into everything, feeling really weepy all the time which I am not sure if it is just because I am feeling so off or what. I am due my next infusion on Tuesday and will tell the nurse before my infusion begins as I am kinda scared that it could be the Tysabra but I also am aware it could be the ms progressing? I realise I am very fortunate to still be so mobile but honestly my hubby and family cannot believe how quickly things have changed. Sorry for my rant, just a wee bit scared. Love to all, Mary
Hi Mary, it is possible the ms is progressing, I was only diagnosed last year but in the last 12 months I have steadily got worse. My balance and walking is shocking - regularly walking into my colleagues and I’m extremly grateful for walls etc. to prop me up.
You are doing the right thing by telling the nurse before you next infusion - I dont know anything about that drug, is it possible you will feel better when you have had it?
SorryI cant be any help, A
Thank you so much for replying, I am very grateful. I will defo tell the nurse before the next infusion starts. Really trying my best to battle on but this is really wacking me this time. I will keep you all posted.x Mary
MS is much more likely to be the bad guy here. Tysabri is terrific for reducing the number and severity of relapses, but relapses can still happen. With luck, the Tysabri means you will get better faster. But it is the experts you need to ask, obviously, and your chat with the nurse at your Tysabri infusion is a perfect opportunity to do that. I am sorry that you are having a worrying time.
Alison
Thank you so very much for the lovely reply, you guys really are the best. I have written all down in a wee book and will ask the nurse on Tuesday. I will give work my best shot tomorrow and hopefully get through thast. I will let you all know xx Mary
Hello everyone
Had my Tysabra infusion today. When I arrived and the nurses were doing my obs etc I spoke to them about my worries and telling them all the things that were happening. They did not start my infusion and got my conusltant up to see me. I was very grateful as they are all so very very busy. My consultant did a wee examination and he decided that we should go ahead with the infusion and spoke at length at how the ms had been very active just before I started Tysabra and although it will not “undo” the way things are just now it may just halt things for now. As I am JC positive they will keep an eye on things. I am much more settled about things and will adapt to the “new” me. Once again thanks for being there always.
Mary x