Hi everyone Not been too good since Saturday, started with sickness and diarrhea and then woke up Monday morning full if cold, not good! Been stuck in bed since then, my ms is playing up. I’ve been on Tysabri for 4 months now, so far so good (fingers crossed). I know that when we have colds, bugs etc. our symptoms can be worsened temporarily until its goes (I am experiencing that now). What I’ve also heard is that 5 or 6 weeks later some people find they have a relapse. What I want to know is if these people who have had relapses following illnesses are on any treatment, particularly Tysabri and for how long they have been on treatment and how severe the relapses were. I don’t know why I do this to myself I just suppose I need to know. I know we have to get on with it and try not to worry about things that might or might not happen but I am still quite newly diagnosed and have been through the mill these last 12 months (I appreciate there are people a lot worse off than me) but I still haven’t had time to come to terms with the idea yet and basically I’m scared. I’ve been doing so well since starting Tysabri and I’m afraid the worst might happen. Thanks in advance x
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Sorry can’t advice. I am newly diagnosed and I know the felling of being scared well. I’ll send you a hug. Hope someone else can help you more
Hi. I was only dx last summer and am on rebif not tysabri but I think being on any DMD’s is only going to prevent a certain percentage of relapses. From my understanding, so far, relapses can vary each time in severity or length. I was worried having had a bad one a year ago that lasted months and left lots of residual symptoms that they just got worse and worse. However having asked about this, was reassured that this was not always going to be the case. A mild relapse can follow a severe one. The trouble is that ms is so unpredicadable no one can really say how bad or long a relapse will be each time. Hopefully the DMD’s will help the severity but I am not sure how we would ever know what it would have been like without. The unpredictable nature of ms is horrible. Hopefully someone with more experience will tell you if that is not right. Sending a hug and hoping your symptoms don’t last long this time. Mish x
Sorry you’re having a rough time. Not familiar with dmd s as don’t qualify. I guess the not knowing is the worst. Have you spoken to GP or MS nurse about your worries. Try not to get too wound up - from what I have experienced that stress/tension won’t help a relapse. Hope you feel better soon. Ann ((((((((((((hug))))))))))))
Thank you all for replies. I have spoken to my ms nurse and she says its possible. Im just so fed up of all this. I don’t mean to sound selfish it’s just so hard. I have tried my best to stay positive and keep my chin up but I can’t help but fear the unknown, I suppose we all do dont we? X
Hi , I’m sorry your not feeling yourself . I’ve been dx 3yrs and on tysabri for 3yrs too , I find before a cold or something my ms plays up then I get a cold once it’s gone I’m ok . I’ve met a lot people on tysabri most are fine , but I know how hard I have to push myself to be positive . I’m off work at the minute , i work in a school so it’s school holidays and my 3 children have worn me out , i feel sluggish and I’m not sleeping well because of the change in routine . Try not to worry Hope x
Thanks Hope it’s good to hear you’re doing well on Tysabri. I know I’ve just got to adjust to the fact I can’t do some things I could before and try my best to stay as positive as possible x