I am pretty new to MS, having been diagnosed with RRMS in September 25.
I started treatment with Kesimpta in December 25.
I didn’t have any big obvious symptoms such as numb limbs, loss of vision etc before it was diagnosed. I was diagnosed because a precautionary brain scan for something else revealed lesions and then that set me off down the diagnostic path for MS.
However, over the last few weeks, I have felt rubbish. My legs feel weak, like there is no energy in them. The closest thing I can describe it is as though they are ‘empty’, a bit like when you haven’t eaten.
My fatigue has been much worse and yesterday my left pointer finger started to twitch intermittently.
I’m scared.
I am on this wonder drug which is supposed to stop it all in its tracks, and yet I appear to be progressing. I seem to be going from a few minor symptoms to more symptoms, despite the drug treatment. My itching has also restarted, but the weak legs and finger twitching are new.
I know I should probably contact my MS nurse, but I am scared what this all means. I am only just getting my head around injecting myself each month and beginning to process that I have this disease. I thought I had years before it might progress. And now I maybe don’t.
Can any one relate to the feeble legs feeling?
I would love some words of support or reassurance if you have any.
Hi Alison, I’m not on Kesimpta but I’m wondering if your recent symptoms are mainly a side effect of the drug? Might be a very good idea to contact your MS Nurse.
All MS drugs bring side effects of one sort of another but from what I know they do decrease with increasing use and as the body gets used to the drug. Also and again from what I know you can get treatments to help deal with the side effects.
Kesimpta was my first DMT which I start Oct 2024, I was ok for the first 3 months. Then spasticity hit from the waist down in both legs plus my left arm, it became increasingly difficult to walk even with stretching and meditation, I would lose power in my legs finding it increasingly difficult to pick my foot up to take a step. I then lost flexibility in my left ankle , that’s when the infections started every month after I had my injection with outbreaks of psoriasis. I reported to the ms nurse and my neurologist booked me in for an MRI and they found no significant changes . So it was agreed I would stop this DMT and I moved onto ocrevus. I had my 2 half doses last year and due my full dose in may.
I would suggest speaking with your ms team, as there’s been several people who have had similar experiences with kesimpta. Also my fatigue on kesimpta was horrible, but there’s been a slight improvement in that with ocrevus. I hope you get some answers and things settle down for you.
I hadn’t thought that the symptoms I’m experiencing might be down to the Kesimpta, and I’m sorry you had such a shit time of it on Kesimpta @animali , it sounds awful. I hope the Ocrevus works out better for you.
I think you are both right, I am going to have to talk to the MS nurse.
It helps to know I am not on my own, it really means a lot to me to have your support, thank you xx
Hi Alison, you’re very welcome indeed and really hope things soon start improve for you.
So far so good but I guess only time will tell but I’m remaining hopeful. Tbh the ms nurses hadn’t heard of this response to kesimpta, but was chatting with others who have gone through similar experiences of this DMT.
No you’re not alone, and it’s a start in the right direction for you.
Good morning Alison. Do indeed have a word with your MS nurse (they’re great in my experience)
My RRMS and epilepsy was diagnosed in February. My hands do tremor and my left index finger seems to do whatever it wants if I reach for a switch. I blame most of it on my lesions being on the right side of my brain. I have a meeting with my neuro consultant next week where I’m hoping for updates on my latest scans.
He’s also going to discuss DMTs with me - I have high hopes for Kesimpta.
for now, it looks like a lovely day (if a bit chilly) again so, maybe put the kettle on and try to enjoy the sunshine
Hi Alison - a few words of encouragement from someone who has been living with MS since 1972 way before DMTs came on the scene. Now aged 84 I have slowed but even with MS I had some great adventures even with my wheelchair to help me.
Stay positive Alison - we’re all here for you
Essie xx
