I’m newly diagnosed with MS following a bout of Optic Neuritis. Other than that 49 Male fit and healthy. Just started loading doses of Kesimpta so been researching.
Question I have is, I’m in the UK and my MS nurses have told me that they wont tell me how many lesions I have because they don’t count lesions. They are more focused on the progression of the lesions because they “can better predict long-term disability progression more accurately than other lesion-based assessments”
This makes sense, but surely I should be told if I only have a few small lesions or if I’m riddled with lots of bigger ones?
Anyway, did my 2nd Kesimpta loading dose yesterday - feel fine today, no negative effects. (Had headache and achy after the first one, but went to bed early and was fine the next day).
If you’re on a high-efficacy DMT (as I am and you are) we can make certain inferences with reasonable confidence, can’t we?
When I asked the question, probably 15 years ago, I was told ‘about the number you would expect’. I took the hint, started Tysabri and didn’t ask again.
Also it’s worth remembering that number isn’t your only issue with lesions – it matters where they are too. You can have ‘lucky’ lesions that don’t really seem to cause more trouble. And you can have unluckily-placed ones that cause absolutely havoc. So it’s not just a numbers game, although I’m sure that numbers matter too.
It is very understandable to get concerned about number of lesions but resulting symptoms are not closely related to number. Location is more important. If there are more than a few the number is probably not worth worrying about. The MRI machine and the scans requested will influence the number detected. If there are more and diagnosis is clear cut what does having an exact number help?
If you are still concerned it is probably better to ask your consultant as the MS Nurse may not have the information anyway. You can request your MRI results from the hospital. The raw scans are interesting but in comprehensible to us, but the accompanying report is more useful. Someone many years ago used to help with interpreting these and a guide is available in the forum.
Hi @timxd22, really relate to the feeling of wanting to know the medical ins and outs of your MS. I’m also newly diagnosed and starting Kesimpta soon (glad to hear you haven’t had too rough a time with the first loading doses!).
Knowing my exact number of lesions hasn’t really helped me to be honest - I’ll obviously be very interested to know if new ones appear in future scans etc, but honestly hasn’t made a massive difference.
If you really want to chase down that information, sure you should be entitled to it etc and definitely ask your MS nurses/medical team, but it didn’t affect how I decided on treatment/understand my MS really.
