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11 months ago

That’s the question you’ll need to ask the neuro team. We’re not medical so couldn’t pronounce, but I’m guessing the answer will depend on which level of drug you’re on currently and also how your other symptoms and general health are presenting. Unlike fifteen years ago, there are choices around treatment so there will be a discussion to be had. While you wait to see your team it might be worth keeping a daily journal of symptoms which could be the starting point for that discussion. Let us know how you get on.

11 months ago

@laura94 , I agree it’s a question for your Neuro.

But, Avonex is one of the least effective first-line treatments. The appearance of two new lesions does tend to suggest that there has been some MS activity. So, there may well be cause to review your DMT.

11 months ago

Thanks for your comments guys! I guess I knew that it was a question for my neuro but kind of panicked since they just sent me those results in the post – I don’t have another appointment until summer 2019!
The thing that confuses me is that I don’t have any symptoms. The last noticeable symptoms I had were before my last MRI in 2017, so I was shocked to find out there were new lesions.

11 months ago

Hard to say, I have a very proactive neurologist, so I’ve landed straight on Tysabri, but — if I were you — I would try to speed up the appointment, for your own mental well-being, if not anything else 😉

11 months ago

Hey @laura94, do you have a nurse? If so, they need to push this through for you. It’s not great that you received this news by letter and no follow-up 🙁 sometimes, having a lesion doesn’t mean there are noticeable symptoms present, so you never know. And yes, the good thing is that there are stronger DMDs out there, so you might have to become an activist on your own behalf! X

11 months ago

You dont have to worry though
I was on abonex and altho ive never had any relapse the past five years before taking it i had endless relapses with it
I stopped it on 2011 and relapses stopped untill noi hardly ever get relapses but my brain is full of lesions enough to cause atrophy with active lesions
But i get one relapse in a year or two

Try change your DMT plan and choose something more effective but not so strong for your MS stage

9 months ago

@laura94 statistically you will only notice symptoms for 1 in 10 lesions about. Thats why an MRI is so important to see progression. Its mean your DMT isnt working, just maybe not as well as it should. Here in the US its called breakthrough disease activity and it would be recommended to change the DMT. You really shouldnt wait to see your doctor. It is possible based on when you started the DMT that this would have been from before. It can take several months for the DMT to begin working.

Can you share which DMT you started and when? So for exampe Tecfidera can take 24 weeks to become fully functional. so if you have an MRI within that time period you cant be sure the DMT isnt working.

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