I am just over a week post round 1 and feel like I’m almost worse than I’ve ever been. I relapsed with a major balance and motor relapse in January and was on steroids nearly constantly for 3 weeks before lemtrada. Other than that I’ve had so many relapses since I was diagnosed in Jan 2017 I cant tell when one began and another ended.
Now I feel like my bottom half is a dead weight. My day is getting up and dressed, 20 mins to get downstairs to sofa, only getting up to the loo then back to bed. I can only walk with walls/furniture/other support. Days when I have a bath, my muscles are usually so tired that my husband has to lift my legs up each step to go to bed and that’s usually 6 hours later. It’s awful.
I know I’m to expect the first few weeks are the worst but I have no home help or adaptations as the hard v affecting mobility happened so close to lemtrada, my husband and family have been working to look after me, so i just wonder how long it took people to improve/feel changes etc? Is it to do with the fact I had a bad relapse so close to the treatment? And that I had so many before treatment?
Anyone else’s experiences would be helpful 🙂
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