Hello, I had my initial event in September 2019 and was diagnosed with RRMS in July 2020. My Neurologist saw lesions in my brain, some of which were enhanced and some were dormant. Although she could not see any lesions in my brain stem, she advised some would be there based upon my symptoms, which are mainly sensory ones, and it is likely that the MRI didn’t show them. I had a lumber puncture a few days after my initial event which came back more or less clear. I have made a 80% recovery from my initial event, but still suffer some persisting symptoms, mainly visual issues (INO) and vertigo, nausea etc. Have been taking Copaxone since September last year.
My question is that I wondered whether any future relapses are likely to be confined to my brain and brain stem, or is MS random and could impact my spine? I had a full spine MRI which showed no lesions and I am not suffering any symptoms which are normally associated with spine lesions.
Any information or comments which can help clarify this would be greatly appreciated.
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Hi there,
My lesions, are all within my spine, my sister’s were within the spine for many many years, but a couple of years ago she had one very nasty relapse which left lesions in the brain stem, awful ongoing symptoms after this attack, my cousin on the other hand has all her lesions in the brain.
So in short, MS is unpredictable.
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Good answer Jactac. Exactly right. It’s an impossible question to answer. MS is unpredictable and utterly contrary. I’ve got/had lesions in brain and spine. There’s no telling where or when I might get others.
To protect against future relapses / lesions / damage / disability, being on the best disease modifying drug (DMD) possible makes sense. For that reason, I’m wondering why you’re on Copaxone Silverfox. It’s one of the older drugs, the doesn’t have too many side effects (possibly why you opted for it), but also not particularly good relapse reduction potential.
Have you looked at: MS Decisions aid | MS Trust ? You could consider changing to a more effective drug. Perhaps a discussion with your MS nurse?
Sue
My spine has always been clear, but most of my symptoms supposedly relate to spinal lesions. But then again, I’m always pretty weird. MS definitely has a mind of its own.
Thanks for everyone’s comments. Regarding my DMT, I wasn’t given any choice, so just accepted that the MS Nurse/Neurologist thought that was the best one for my situation. My MS diagnosis was based upon the McDonald criteria for a CIS with lesions in different areas, i.e brain and brain stem, and compared to many others, my MS seems rather mild. Perhaps this factored in their decision to place me on Copaxone, however I will raise this with my MS nurse and thank you for this advice. Since my initial, single event I am doing everything possible to prevent a further attack which has meant swapping some of the pleasures in life for more healthier options. At 58 years old, I am probably as fit as I have ever been, so at least there is a small glimmer of a silver lining on this dark cloud of MS.