Hi, I just received my letter from my most recent MRI scan and they confirmed I’ve had 22 new lesions in my brain since march when I first got diagnosed and to say I’m terrified is an understatement. I had a relapse last month so I guess it makes sense. I’m not on treatment yet, I start ocrevus next Thursday. I feel so scared and alone and the neurologist hasn’t explained what this means they just told me that it’s highly active. I’m at a bit of a loss here feeling completely terrified
Well that’s not nice news to get, and I think I prefer ‘about the number you would expect’ which was the diplomatic answer I got when I asked once how many lesions the MRI showed. I never asked again.
Honestly, I’m not sure the cold, unvarnished truth is always very helpful. However, it does strengthen one’s resolve to stay on top of things, and I am glad that you are starting an effective DMT soon. In my experience, that can help a person feel a little more positive about things. I am sorry that you have had this knock to morale, though. You might want to try for a call with your consultant to talk through how you should be thinking about it.
Hello, an MS diagnosis is a scary and lonely experience. I remember mine years and years ago and think it took some 6 months to begin to come terms with it. It’s possible that you have just been unlucky in having a recent (ish) relapse with 22 lesions before starting treatment. When i was diagnosed I was told I have ‘quite a few lesions’ but I’ve never asked how many and to be honest don’t particularly want to know. I think that what matters is not so much the number of lesions but their location and whether they result in new symptoms. The brain is a clever thing and shows considerable ‘plasticity’ - if a lesion damages one ‘route/ pathway’ for nerve signals it can find new ones ( it’s possible that this has happened with me - although I have ‘quite a few’ lesions I don’t have quite a few symptoms
Ocrevus is a pretty effective treatment not just in terms of reducing the number of future relapses but also reducing the development of disability.
Anyway don’t despair/ panic. Ocrevus is pretty good. Also do what you can to help yourself- a good brain healthy diet, exercise and try mindfulness/meditation to lower stress etc
All the best
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It’s frustrating when specialists don’t fully explain what’s going on. “Highly active” MS means the disease is progressing quickly, but early intervention with treatments like Ocrevus can help slow it down significantly. Support from others going through the same can really help during this phase.
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