l was diagnosed with MS 7 months ago and been on Tysabri since then and going well and stable and recent MRI last week showed no new lesions, however about a month ago l started feeling dizzy, fatigued and more difficulty walking, its not a relapse as theres no new lesions, what do you think this is, could it just be a temporary flare up and it wiill get better or could be a negative reaction to tysabri, should l ask to change to ovrevus, Can MS get worse even if you dont have new lesions
It might be case of Smouldering MS, or just the result of the hot weather. If Tysabri is preventing relapses, then that suggests to me it is working, but no harm in discussing with your nurse if it remains a concern.
Thanks, its not hot weather as lm not living in the UK at the moment but living somewhere cold. l hope its not smouldering MS as theres no treatment for that at the moment, if it was smouldering MS would by neuologist be able to diagnose it? would octvervus be better then tysabri if l have smouldering MS? l was only diagnosed with MS 7 months ago, l thought that might be too soon to get smouldering MS. Could it be a psudo relapse where old symtoms get temporary worse without new lesions, that what l hope
I’ve been on natalizumab a long time. A couple of times over the years I have felt that those was a relapse brewing, but then it’s faded away without coming to anything. Maybe your experience something similar? The fact that you know there are no new lesions suggests that you’ve been in touch with your medical advice about all this. What have they advised?
They just said its good news because theres no new lesions, but l see my neuolgist in 2 weeks and l talk about it then
Unfortunately, your MS probably started years ago, so damage is likely to be happening for some time. As you say, there is no treatment for smouldering MS and can’t see how changing DMT is going to help.
This is from the professor of neurology at Barts and should help answer your questions.
l hope its just a pseudo-relapse where old symptoms come back worse short term rather then smouldering MS, can my neurologist determine the difference
If I were you, I would take reassurance from that and hope that your current symptoms are just one of those things that come and go for no reason. If you had a big ugly old new lesion, that would be a much nastier matter but you haven’t and fingers crossed you won’t have.
I had new symptoms around 3 or 4 months after starting tysabri , 90% resolved after couple of weeks, no new lesions on brain or spine neurologist basically shrugged her shoulders hopefully it’s just one of the things that can’t be explained and goes away in time
what werre your symptoms
Sorry only just seen your reply , numbness/tingling that started in thumb , over course of a couple of weeks moved up to shoulder , thankfully settled back down over next few weeks just leaving altered sensation at tip of thumb