I was diagnosed with RRMS in October 19 2023, after spending time in hospital for what was believed to be a stroke at first though after 2 weeks of Ct scans Mri scans and lumber puncher test they confirmed i have MS my symptoms where, complete loss of control to my eyes and my balance was off.
after a course of steroids’ my eyes and balance got much better within six weeks, i am left with jumpiness of the eyes on movement and still problem with balance however way better than it was, though now I’m back working and thankful for it. I have had my first jab of Kesimpta today around 2 hours ago and so far no issues at all. I will keep updating when i can thanks for reading.
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Welcome welcome, good to hear of the positive effects of your treatment.
I too had severe symptoms that got quite a bit better after steroid treatments.
I actually also want to try Kesimpta I’m thinking these days. On Gilenya for more than a year, but attacks are still spreading numbness, prickly sensations and weakness various places so really hoping I can finally move on to the next step and have things calm down a bit. But my doctor is quite reluctant it seems.
I’m hoping the medicine works out well for you! It’s quite a relief to be able to return to work safely so I’m glad to hear the positive news!
Welcome to the site was diagnosed in September 2023 after spending a few weeks in hospital. My balance just went to straight hell and kept nearly falling down. Thankfully I didn’t need the lumber puncher as the 3 MRIs came back with more lesions on my brain and spine than I would like to think of. They gave me steroids as well which helped out though it didn’t give me back all my mobility sadly. Kesimpta is the self injection one isn’t it? That one was ruled out by me as the fear of needles made me question if i could. Recently finished my 2nd dose of Ocrevus done by infusion I had a slight hot flush first time but second time nothing. Please keep us updated as things go forward.
Hi PeteTheTechGuy
yes Kesimpta is the self injection and just for a bit of info it is injected just like an EpiPen, Ocrevus was my other option given to me from what i read they seem very similar medication in the highly effective category, i understand how you feel about needles one of my daughters works her self up so much she faints after a blood test. i hope every thing goes well for you and i will keep updating on how I’m getting on with Kasimpta please let me no how you get on with Ocrevus thanks again take care.
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Hi Driath,
Thank you for your kind words and wishing you the best in your journey, as i have found out in the past sometimes you have to keep pushing to get what you feel is best for you and ask lots of questions like why they believe Gilenya is the best medication for you and not Kesimpta or another effective medication though you more than likely have done this already. again thank you and good luck.
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Hello again, thank you for your reply.
Yes indeed, it seems a bit of pushing is necessary to get things moving sometimes from what I hear as well. But here in Japan it seems they are very reluctant to do anything else than what everyone else does, and Gilenya it seems is the medicine my doctor uses the most and so the one he wants to use as much as possible. He got me off Tecfidera as fast as he could since he didn’t know it very well, but to get me off Gilenya he wants very very clear proof of activity showing it isn’t enough for me. So I’m in the strange position of wanting my lesions to be more obviously active, rather than right now where I get little baby step new symptoms all the time but nothing new particularly visible on MRI.
Rather odd to not be able to be happy when the doctor tells me my most recent MRI was fine.
I have also been considering Ocrevus and indeed wondering if it comes down to it, which one I should choose. I do find the idea of an IV every half year a little less imposing than those self-injections, also because it seems they have to be kept rather cool and our first is Japanese as thus sits only just under 10 degrees rather than the European 5 degrees standard, which means the medicine might be in trouble. I constantly worry my little son will randomly nick my medicine as well to be honest. He eats anything that looks even a little fancy at this age. Nom nom nom, delicious used woolen socks and old unwashed milk cartons…
A parent’s eternal worry I guess.
I can understand your daughter though, god I hate blood tests too. Had so many failed ones where my arm turned all purple for days afterwards. But can’t say I like IVs that much more, so trying to figure out which one is best long-term health-wise.
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Hello again, just an up date to my previous post on how I’m getting on with my Kesimpta medication, on my first dose after around 4h i started having shakes, to my wife i looked like i had been out in the cold for to long though i felt fine and warm this lasted around 2h after i was feeling fine. I have now taken my second dose of Kesimpta more than 16h ago and have had no issues my next dose will be in 2 weeks i will keep updating.