Ok where do I start! I got dx in 200 9 wen I was 19 I was having relapse after relapse so was put on tysabri-it was amazing!!! Was in remission for 3 yrs woohoo but then started having infection after infection from jam 2013- lost my sight in July, became JC virus positive and was hospitalised to check for pml. They took me off tysabri and this is where it all went wrong :-(! My right leg hyper extended and foot dropped in my right leg and was in a wheelchair I got discharged 25th sept. My core and legs completely went again on my bday 2nd November and was in hospitL until Xmas eve! I’m now 24 at home, I haven’t been out alone since last August and I am going mad :-(! I am on gilenya and I do not see it helping me and I am down/upset/frustrated! I am currently on crutches/frame/wheelchair at present but I was hoping to hear of ppl with rrms that maybe has relapsed like me and gained most or all of their walking back? How long it took them? Any suggestion how I can help it xx
Hi Fiona
I don’t think I’ve talked with you before but maybe you’ve been on the forum when I’ve been off it and vice versa. I’m sorry to hear you have been having a rough time of it.
I’ve been on Gilenya since November and so far so good for me although of course it cannot reverse the damage that is already done.
Do you have a physiotherapist who can help with your mobility? I do think that after a really bad time with relapses it takes a lot of hard work to build up some strength and control of the muscles again. When we have been off our feet for some time, it’s surprising how quickly we lose all of that. I would suggest ringing your nurse and/or physio and ask for some help. They say that physio is the most help if we access it when we first have problems.
I think, because you have not been on before, your post was held for moderation so I found you languishing on page 2. This should at least bump you back to page 1 where you may get more replies.
Take care
Tracey xx
Hi
Just a quick reply to back up what Tracey said regarding physio. I’d ask tobe referred to one who specialises in neuro stuff, and they’ll be able to help build your leg & core strength, andmake the most of what you’ve got. When I see physio, my walking always improves.
Dan
Hi Tracey
I had RRMS and I was prescribed Avonex… after a few months I developed an allergic reaction to it and my legs swelled… big time. Now I am not on any treatment but the swelling has gone down - whilst swollen I had to use my wheelchair for months as I also appeared to suffer a relapse, but the physio attached to my MS team was really great. She not only helped me walk again but showed me (and made me practise) how to get up from the floor when my legs gave way, and various other skills that I really needed. I am walking again and getting stronger all the time - provided I do my exercises! - I have noticed when I stopped having weekly physio i didn’t do my exercises as frequently as I should and my progress slowed down… now I only see the physio 3 monthly but I do the exercises regularly and I rarely use the chair (marathon Christmas shopping was the last time - but I would have suffered from fatigue if I had tried to walk for the 6 hours!) - I do still use a rollator, but now I also walk about with sticks. Do try to visit a specialist physio - I know she helped me recover my walking. PS I have been told that I am likely to have advanced to progressive, but I have been more active since october or so, whereas I had to stop the Avonex last January so it takes a long time.
Carol