whats the difference between a flare up and a relapse???
Or is does it mean the same thing?
I had last tysabri 1st April as now diagnosed with SPMS and at the beginning July had new symptoms and am now suffering really badly with fatigue,balance problems.saw m.s nurse friday and she said it sounds like a flare up and am gonna get bloods checked then i have a choice of steroids(no thanks) or amantadine.
Really hope things improve soon.gotta cope with son starting new school in a week tomorrow
I never thought there was a difference. I’m sure I’ve heard different MS nurses describe the same event as both ‘flare up’ and ‘relapse’. And offering steroids seems to substantiate that. So is it possible that you’ve got SPMS with relapses? Or still RRMS? Is the nurse now describing a relapse as a flare up because you’ve been told you are SP? I’m sure this is what’s going through your head too. Unless someone out there can explain a difference between the two?
If you are now SP with relapses, you could still be taking a DMD. I’m sure tecfidera can help with relapses even when SP. my neurologist seemed to be saying that when I asked him how he can tell whether I’m now SP or still RR.
Maybe you should try to get an early appointment with your neurologist?
Sorry, lots of ???s rather than answers. Maybe someone else can explain?
Well i am assuming the diagnosis of SPMS in april was because disability worsening a lot and nothing showing up on MRI, so not RR anymore.
My neurologist warned this could happen after coming off tysabri.A rebound relapse as it takes around 3 months for tysabri to come out of the system.He also said if that happens i could go back on tysabri but i am JCV positive and really didnt like being on it, but i have never experienced fatigue like this, ever.
Just a small walk/hobble and i’m wiped out:(
Thank you for your reply.i thought they might mean the same thing
“Fingolimod is now the most widely been studied and provided it is started with 8 weeks of stopping natalizumab it can prevent most of the rebound. The sooner you start it the better. At the Royal London Hospital we have adopted this practice for sometime now. If the switch is in a JCV positive MSers we do an MRI for new white matter lesions and lumbar puncture to analyse the spinal fluid for JCV DNA. If these test are clear the likelihood of asymptomatic PML is low and we start fingolimod. This typically occurs at around week 3 or 4 after the last infusion of natalizumab. As it takes about 6 weeks for fingolimod to take an effect by the time natalizumab is out of your system fingolimod is working.”
Have you tried either Amantadine or Modafinil for fatigue? Either might help. In my opinion Modafinil is the better drug but it’s not always easy to get it prescribed just lately. It could help?
What a pig MS is! As someone said, ‘the gift that keeps on giving’!