Advice, insights… anything!

Everyday living
1

I have such a habit of waffling so I’ve decided to make this more precise and easier to read - hopefully!

  • Diagnosed 2012

  • DMDS:-

    • Rebif, (Interferon beta-1a)
    • Gilenya, (fingolimod)
    • Tecfidera (dimethyl fumerate)
    • Tysabri (natalizumab)

  • Been on tysabri since June 2020, 4 weekly infusions

  • Previous MRI was 2021, most recent April 25th 2023

  • Only head scanned with no evidence of PML but shows 3 new lesions have been found

  • I don’t remember having any relapses, only the increase the amount of spasticity in my legs balance is a bit off, (keep going backwards!) and problems with my speech, however, these aren’t new symptoms and they aren’t present 24/7.

Just wondering does anyone have any insight to why the lesions but no relapses? I’ve heard of smouldering MS but I think that is the opposite way round, where you have more disability but nothing standing out on MRI’s to explain it?!

I do have an appointment with Neuro but it’s not until September and I’m riddled with anxiety with not know what this is and panicking that my ms has progressed into spms.

TL:DR

  • New lesions but no new relapses - help!
2

I don’t know and I have no expertise. What I have heard said is that it’s possible to have silent lesions on the brain if one happens to be very lucky with the placement, but this is less likely in the spinal cord because there just isn’t enough room in there for a lesion to be without causing mayhem. In your shoes I would want to review how well my DMD was working and as part of that I would be asking for them to take a look at my spine.

3

Hello,
Yes I’ve heard of dark lesions that don’t show up on MRI.
Latest MRI dosen’t show any new significant lesions.
I’ve got thyroid problems aside from MS and neurologist didn’t point the reason I feel not much better since January relapse.
Just simply put I got other things going on affecting mobility.
Best,
JP