I’m wondering if anyone can offer me some advice? In 2018 I was diagnosed with Transverse Myelitis, this was high up in my neck which resulted in everything below that being affected, it was a rough recovery but I did eventually make a good recovery. I underwent a lumbar puncture at that time which was positive for Oligoclonal bands but my brain scan was clear.
In 2023, I was diagnosed with Erythromelalgia which they thought was secondary to the TM but Neurology didn’t agree. At the same time I went into early menopause (at 36). Because I hadn’t been monitored since the TM they sent me for a brain and spine MRI which I had last year this showed 2 lesions on the brain and a couple of weeks ago they diagnosed me with MS.
They think it’s mild and have suggested a watch and wait approach or given me the choice of 3 DMDs: mavenclad, kesimpta or ocrevus.
Has anyone been diagnosed with mild MS and done the watch and wait approach? Or did you start a DMD and if so did you regret it?
Any positive or negative experiences with the 3 DMDs would also be gratefully received.
Sorry to hear about your diagnosis, how are you feeling about it?
I was diagnosed in September 2025. My MS is mild I suppose - I haven’t had any debilitating symptoms such as numb limbs or pain or optic neuritis.
I was offered the same three DMTs as you and chose to take Kesimpta.
MS drugs are classified into three levels of effectiveness. Ocrevus and Kesimpta are in the most effective category. Mavenclad is in the medium effective category. You can find out more about all of them on the Ms Society website, MS Trust website and MS Selfie substack.
My personal view is that it’s best to take as effective a treatment as possible, as soon as possible. That will ward off disability as long as possible.
There is a very interesting article on the Ms Selfie substack about the decision to take a treatment (or not) and the odds of disability progression if you don’t. It might be the article that someone posted above, I’m not sure.
In a similar forum post a while ago, someone (@whammel I think it might have been) said something along the lines of ‘yes the drugs have side effects, but what are the side effects of untreated MS? Vision problems, losing function in limbs, losing bladder and bowel control etc. Which would you rather?
That always stuck with me. I know which I’d rather!
My experience with Kesimpta so far has been positive. The support I have received has been great.
I am happy to answer any questions you might have, just tag me
Hi Amy, I’ve not had a wait and watch suggestion but as @whammel and @lnp8acr say, the medical view these days is very much that the sooner you start treatment the better. Sorry to be blunt but your MS might be mild at the moment (I.e it hasn’t caused any serious symptoms) but if it were me I most definitely wouldn’t want to wait for a lesion or two that cause me problems with walking, swallowing or bowel and bladder problems. To me it would be a definite yes to treatment
Thank you so much for the reply. I’m sorry to hear about your diagnosis too but good to hear that you haven’t had any debilitating symptoms.
I guess the best word to describe how I’m feeling is overwhelmed and unsure so all replies are much appreciated.
I’m glad to hear of your positive experience with kesimpta and that quote is so useful, it really does put things in to perspective! I had been considering mavenclad more I think because of the ease of taking but if I’m going to take one it’s probably better to take a highly effective one. I’ll do a bit more research on them. Do you find self injecting ok?
A bit more from prof, G in case you are interested.
Watchful waiting
In many situations, some neurologists think some pwMS will end up having benign disease and are only prepared to start treatment when these patients develop disability. I abhor this practice and is one of the reasons I spend so much of my time disseminating knowledge and getting involved with politics. Watchful waiting in terms of treating MS is not supported by data. It is clear that the early and more effectively you treat MS the better the outcome. The only situation I could condone watchful waiting is when the diagnosis of MS is in question. Sometimes in neurology time is the best diagnostician and if the person has MS it will declare itself with further disease activity which would be the trigger to start DMTs.
The self injection is ok, and very straight forward.
You take three weekly doses, miss a week and then take another dose. Whatever date you took that last dose on, is the date you take the dose on each month.
You can feel a bit rubbish after the first one particularly. I didn’t feel too bad (tired and heavy legs about 2-4 hours after taking it), but I went to bed early and was fine.
A nurse comes out to explain everything and support you in taking the first dose. Then you have phone support and an app afterwards too. My nurse was absolutely lovely
My first three injections barely hurt at all, but my fifth last night hurt more. I’m not sure why. It was only for about ten seconds so it’s nothing in the big scheme of things but I’m going to give the nurse a ring and talk it through.
I got a bit emotional, but I think that’s probably to do with the bigger picture of having MS and still processing that. It’s a lot to process isn’t it? I’m keeping my therapist busy! She’s also very lovely
Overall I think Kesimpta is a great choice for me. It’s still early days but I haven’t noticed being more susceptible to picking up bugs and the convenience is brilliant. You can still travel and stuff. I also like the feeling of being in control of administering the medication I need to help keep me healthy.
I hope that helps. Please feel free to ask any other questions
It’s good to hear that it’s pretty straight forward, I’ve been doing a lot of reading and I think Kesimpta could work well for me too.
I’m sorry to hear that you were upset, completely understandable though, it’s so much to take in and I think it’ll take some time to process it. I’m glad you are speaking to someone I think that really helps x
She’s also very lovely 
x