Last reply 4 months ago
New lesion!

Hi all! Coming in here as I got a call from the nurse this morning saying I have a new lesion on my brain. That’s 2 new lesions in a year. I feel very deflated as you imagine. Has this happened to anyone else recently? How serious are new lesions in the MS lifecycle? I’m DX over 4 years now.
Thanks everyone

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stumbler
4 months ago

@insomniacoffeelover , this suggests that your MS is progressing and that the Tecfidera (well, I think it’s Tecfidera!) isn’t working for you.

Has a treatment review been suggested? If not, I would ask for one.

The following website might help you identify the next move :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid


mlgilber1
4 months ago

I was in the hospital for my symptoms at the end of May, had an MRI, and was diagnosed. Then I started Tecfidera and only a month later suffered another bad relapse and was back in the hospital. They did new MRIs on my brain and spine and had way more than just 1 new lesion. I had them scattered all throughout my brain and a new one on my spine that is 3 times the size of a typical MS lesion. I’m not sure how serious new lesions are, but my ms specialist and I have decided to try a more aggressive treatment even though I wasn’t on the Tecfidera long enough to know if it would’ve helped or not. I agree with stumbler that maybe it’s time for a treatment review. I’m sorry there was a new lesion. Best wishes!


insomniacoffeelover
4 months ago

Thanks guys, I’m going to go on gilenya now! /mlgilber1, have they mentioned Tysabri to you? It’s the blockbuster of MS treatments!


vixen
4 months ago

Hello @insomniacoffeelover, sorry you’ve had this setback but thank goodness there are other options out there for us all, things were so different only twenty years ago. Good luck, I hope this DMD suits you


lightning87
4 months ago

Sorry to hear you have a new lesion but hopefully this is the DMT for you and prevent further ones x


mlgilber1
4 months ago

@insomniacoffeelover They did offer tysabri to me as an option, as well as gilenya, but I went with ocrevus because it’s a bit more aggressive and they suspect I may have devics disease and it should help with that if I have it since ocrevus is an immunosuppressant. Good luck with the gilenya! I hope it goes well!!!


insomniacoffeelover
4 months ago

Thanks everyone, so glad we have this online supportive community x

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