Hi there , I am new here. I have recently been diagnosed with MS. Mixed feelings and emotions about this. It all started on the 3rd July when I was experiencing severe vertigo such as fatigue nausea dizziness balance and co ordination issues. Followed by right side facial numbness and hearing loss in my right ear. Which I still have. After 9 days in hospital 2 spine and 1 brain MRI lumbar puncture and X-ray. They have confirmed I have MS. I am in the process of choosing what DMD I can want and I contemplating on picking Kesimpta (auto filled injections) any views on this? I have done some research on this but would like to know anyone’s opinions on this please. Thanks.
Hi,
Sorry about the diagnosis - what an ordeal. I suppose the one positive is that since you’ve ended up being admitted to hospital, your diagnosis was unusually fast. That should improve your longer term prospects a lot.
I started Kesimpta this January, so I’ve been on it about 6 months. For me, it’s been a breeze and I’m happy with my choice. I wanted the highest efficacy treatment they would give me, and out of those, kesimpta was the most practical.
Side effects: I think you can expect to feel horrible after the first, and possibly second jab. It reminded me of how I felt after my covid jab. A nurse advised me to take paracetamol a couple of hours after the jab to help blunt the effects. And then, just expect to retreat to bed for a couple of hours, like a short-lived flu. After the second jab I had a headache, but I timed it to let myself sleep things off before the next day at work.
Other than that, no side effects at all so far. The injections themselves are easy. Some hospitals show you how to do it, some contract a private service to visit your home and show you. It’s easy, you just press the pen against your chosen injection site and hold for the required time. You don’t see a needle. Then you need to dispose of your “sharp” in the bin they give you. At my hospital they require a phone appointment and then a blood test to monitor before issuing each batch.
Other drugs similar to kesimpta seemed to require you to go into hospital for infusions. Apparently, some people see this as a social outing! But the last thing I wanted was more hospital visits.
I’ve had no official “relapses” since starting - existing symptoms remain as they were.
Ask if you have other questions - there are several kesimpta people on the forum.
1 Like
Hi there, thank you so much for replying. This has gave me a lot of reassurance. Also sorry you are going through this yourself too. So my choices were either this one or the one where you go to hospital on an IV drip as the both of them are most effective at 70% but like you said , sitting there for 4-5 hours isn’t convenient for me whereas i feel the injections would be better.
So I’ve been out of hospital since Wednesday just gone. I still have right side facial numbness, hearing loss in my right ear and I’ve noticed my right hand has spasmed a couple of times. Will this go? & could you please tell me, if you know. How will I know if I am relapsing. Sorry for all the questions.
Hi,
Glad you are out of hospital.
I’m assuming you have “relapsing remitting” MS rather than progressive, from what you say.
My understanding is that a “relapse” is defined as new symptoms lasting over 24 hours. You can recover from relapses over time - perhaps months. Some people recover completely. Some people recover, but not 100%. Since your episode is recent - starting at the beginning of July - so it’s early days yet, plenty of time for recovery.
It is also possible to get transient symptoms that just come and go. I get these - patches of numbness or pins and needles that can last for a minute or two and fade. Apparently a symptom that comes on and gets better within 24 hours is not counted as a relapse… but perhaps check with your neurologist.
I try to encourage things along with exercise, which is definitely recommended - so anything you can start/resume would be good. There are also strength exercises for people with MS on youtube, eg the “Move more with MS” series. You can get inspired by watching the Nielsen twins - both have MS - compete in the Olympics!
Thank you! Yes I have RRMS. I was given several booklets about it but it’s so overwhelming, a lot to take in. Ok thank you for that bit of information. Thing is, as I still have the numbness on my face, hearing loss in one ear, still have a little bit of off balance (here and there) I’m unsure whether that is me relapsing or just still having my symptoms ect. Also I have noticed since being in hospital , I am feeling hot and sweating way more than usual. Is this normal for MS?
Well, could it not be a continuation of the relapse that landed you in hospital? The symptoms seem similar. So it sounds like you are just in the recovery phase - recovery can take some months.
On the heat, some people with MS are sensitive to heat, so it could be related. Having said that, the weather has been pretty humid and close recently. If you google “MS trust” and “temperature sensitivity”, you’ll find an article about it.
Ok great, thank you for this information Leonora. I felt I have learned a lot in this short time. Appreciate your time, thanks 
Hey sorry to hear about your diagnosis, I just wanted to say that pretty much everything Leonora said about Kesimpta was as my experience…don’t be put off after the first injection side effects…thereafter it is ok. Good luck, take care of yourself and give yourself time to wrap your head around your diagnosis, it’s hard but like most things in life gets easier with time xx
1 Like
Thank you for your reply @LizAC im coming up to my 4th injection (first monthly one) and ever since, I haven’t felt my usual self. I’ve been feeling so exhausted , no energy and I’ve been getting constant headaches. I did let my nurse know and she did say to keep an eye on it that’s about it so haven’t had best experience on it but I’m
Just hoping with time my body gets use to it. How long have you been on it may I ask? Have you been ill at all on it