I am on Tysabri I have no new lesions but still relapse three times per year.
Hi everyone
Not been on here for about 18 months so I guess I’m just being selfish and dipping in when I need something so sorry about that.
I’m 37 and was diagnosed in 2010 though in hindsight had MS since about 2008. I have RRMS.
I have been on Tysabri for a long time I’m at about infusion number 36 or something like that.
My problem and reason for popping up on here again is that I am still relapsing. I seem to have two manageable/three days of steroids relapses and one huge hospitalised/five days of steroids relapses per year. I am much improved on Tysabri albeit that I still can’t walk properly (I’ve been in a wheelchair for out and about since the relapse that got me diagnosed).
I dislike the relapses and particularly my last one was devastating for several months but the thing I really can’t stand is that I have no new lesions. I don’t want lesions but I do want to know why I relapse if I don’t have them. I still have old ones but not new ones bar two tiny ones since I started Tysabri.
Why am I still relapsing if I have no lesions? My neurologist just does that shrugging thing that they do and then does a little metaphoric celebratory dance at my lack of lesions. My MS Nurse is sympathetic but without answers.
Does this happen to anyone else? Do you know of any research about it? If it happens to you what has your neuro or MS nurse said about it?
I have enquired as to whether I am some sort of hypercondriac and if I could be treated with a decent placebo that would fix it and be on my way. I’d be fine with that if that were the answer. I just want to stop relapsing.
Thanks
I feel all alone.