I’m 35 and have been recently diagnosed with MS after presenting with falls weak legs and Transverse Myelitis found in spinal cord on MRI scan plus brain lesions. Total rollercoaster of a hospital admission and many doctors seen prior to this point who did not identify the neurological signs. I’ve had what was probably relapses for several days at a time for a few years. I’m now 10 weeks down the road from the high TM diagnosis. Things keep getting worse.
My left leg was the worst affected but right leg also weaker. Lots of sensation changes plus other things from neck down. Had the IV high dose steroids 5 days regime in hospital and was told unclear end point disability wise.
After a long hospital admission and wheelchair, zimmer frame, I went home able to walk inside without an aid (wall touching and furniture etc) and 1x stick outdoors over v short distance. I guess EDSS 5.5/6.0.
I had my first Ocrevus last week (half dose) and since the weekend I cannot use my left leg to stand or lift it up at all. Started using rollator wheels but now can’t weight bear my left quads and hamstrings aren’t working. Needing frame to transfer from bed to commode as cannot get to the toilet and essentially having to stay in bed most of the time. Have to be pushed in wheelchair if need to get out the house to hospital appointments etc.
Due to have more Ocrevus on Wednesday…neurologist have said this could be another relapse… I guess I’m looking to see if anyone else had transverse myelitis at first presentation and got more disabled about 2-3 months post diagnosis or if anyone got worse after Ocrevus like this? But then got better?
Worried it’s actually PPMS not RRMS… although they say Ocrevus is the treatment for that too. I guess I’m really concerned if I’ll get movement and independence back…
Can’t do much at the moment but hoping if I can walk again I can get into a pool to do some water walking.
Trying to stay positive but resilience feels low when facing worsening movement with no signs of improvement…
Hello @Ridethewaves
I was on monthly Kesimpta injections and just came of it now, I think Ocrevus is also an anti CD-20 drug, so they’re both similar.
I rely on using the rollator for mobility nowadays too, think it’s down to the natural multiple sclerosis disease progression, so whether I’m still RRMS or now SPMS idk really.
Best regards,
JP
Different situation to you: male, 62, PPMS, but met my consultant last week and we agreed that we would pause ocrelizumab for now. Had my first (in 2 halves) this time last year, full dose in April and due to have my third in a couple of weeks.
In my case, I’ve become immunosuppressed and have picked up lots of infections. A really bad bout of cellulitis which took forever to heal, several UTI’s and leg lymphoedema that won’t stop leaking. Plus, I don’t feel like I am one of the 70% of recipients who feel that rate of progression has slowed. I went to consultant who readily agreed. Ocrelizumab doesn’t work for everyone and if I end up feeling worse because of the side effects, then there’s no reason to stay on it.
Have a frank conversation with your consultant. At least if you’re RRMS, there are other meds you can try - with PPMS, currently ocrelizumab is the only game in town.
Graeme
Do you mind me asking how long you have been diagnosed and were taking Kesimpta for? How often did you get relapses taking it?
Was it your own decision to stop taking it or did the neurologist stop it?
Thank you
Thanks Graeme. I was tempted by Kesimpta as it sounded like people are more well on that… Especially with winter bugs and only recently starting but having another relapse, have kept quite isolated. Infection risk is a concern.
It sounds like Ocrelizumab was not right for you. The neurologist suggested this one as best for me in the first instance. Perhaps I keep with it for the first 12 months and see what re scans etc show and take their advice if they recommend alternative if I’m not doing well.
Yep, we’re all different!
Keep an eye out for the BTKi meds coming through. They all end in -brutinib and are finishing clinical trials quite soon. Replacements for anti-CD20’s, they are more targeted as don’t wipe out all your B-cells. Unfortunately some can trigger liver toxicity. I was on one and it was working but I was affected by liver toxicity, so had to terminate the trial, hence went back to ocrelizumab.
Hello again,
I’ve had multiple sclerosis since 2000-ish, but I think I noticed the subtle symptoms all through the 1990s, of course I knew nothing of MS back then as I was still too young.
I was officially taking Kesimpta for 13 months, but I dropped off taking it after about 9 months, due to recurring infections just like Grahame; my neurologist officially deprescibed me last month, not taking any DMT now.
Just concentrating on the physiotherapy these days, it’s going okay, by the way I’m 6.5 on the EDSS scale I think due to having to rely on my 2 nordic poles or rollator-walker to aid mobility nowadays.
Stay strong,
JP