Hello everyone. I recently got diagnosed with MS after 4-5 years of monitoring and I am having trouble deciding what to do. I would appreciate thoughts from anyone who has had a similar experience as I’m feeling very stuck and distressed.
My first symptom 5 years ago was optic neuritis and the MRI showed the lesion responsible for this. Then over the last 4 years I repeated the MRI multiple times with no new lesions and no symptoms. Recently I got diagnosed with MS after the most recent MRI showing some small lesions that would not cause any noticeable symptoms.
I was advised to go on effective DMT (probably Kesimpta) but I am very unsure about what to do. Given that I’ve not had symptoms in the last 5 years as far as I am aware, is it worth going through the possible side-effects of the DMT? I am stuck not knowing what to do, should I wait and monitor for longer or should I start treatment asap?
My main concern is that my quality of life will become worse after starting treatment to prevent something that might never happen. Any thoughts are very highly appreciated!
I was once told MS is mild till it isn’t! It’s totally up to you whether you choose to start treatment or not. But I was told mine was mild in December 23, then by September 24 I’d had 4 relapses now wear a foot brace and use a walking stick. I changed neurologist and started kesimpta in October, it’s the best thing I’ve done and it will improve my quality of life. Just think about it first before you definitely decide no. X
All the evidence suggests that the sooner you start treatment, the better the long term outcome. It’s a sad fact that you can’t correct damage already done, so delaying treatment is a big gamble.
MS can be pretty unforgiving if left unchecked and drug side effects are only possible.
All the best with whatever you decide.
When you have no symptoms is a great time to start. The scan evidence shows that your MS is there and up to no good. You’ve got away with it so far more or less and hurrah for that. It given you fair warning, which is playing fairer than MS usually does. Please don’t waste that stroke of luck. I know it feels like it’s making your life even harder, having to decide what to do, but it truly is a lucky break to be faced with that choice before irreversible damage is done.
Hi SDCK, I totally agree with the other replies, I was diagnosed in Feb 2007, went straight in at SPMS, after I’d ignored very simple symptoms, long story won’t bore you, anyway by the time I was diagnosed I was told it was too late for DMT. I did read in a MS matters magazine a good while ago now, not sure who wrote it, that the sooner spmeone goes on DMT the better, so if it were me I’d give it a go and hopefully keep it at bay for as long as possible.
I agree with all the comments and advice already given. Why take the chance ?
Once the damage is done it’s too late.
You’re in the best position possible, take the DMT and hopefully prevent and/or slow down any progression.
MS Trust has information on all the DMTs. It’s worth reading and see which one suits your lifestyle best.
Take care
This was my predicament! I’ve had ‘mild’ MS for some time (13 years + ) and likewise did not (and do not) want to take meds that might make me feel worse.
But a recent MRI scan has shown new lesions and active MS. Neuro has strongly advised that I start treatment so that’s what I intend to do.
I do understand where you’re coming from, it IS a dilemma.
I can’t advise about side effects of DMTs, as I haven’t yet started, and I am apprehensive about it. (Might be Kesimpta). Some people have zero issues or side effects, some say they feel awful while taking it. Everyone is different.
Some really good replies above.
Best of luck, whatever you choose to do.
Hi
Personal choice really about treatment, but in my opinion I think the sooner you start treatment the better it will be for you in the long run. What I have learned with MS, relapses can strike any time, it’s happened to me and I will be going on medication this month. I am worried and I am sure you are, but if it helps then it’s a win situation. Good luck with what ever you decide.
LG
Definitely, definitely best to start treatment now. Sorry to be so stark and blunt but Delaying because you havent any recent symptoms etc is a bit like being told you have very high blood pressure but not doing anything because you have no symptoms until one day , bang you have a heart attack or in this case a relapse that leaves you with problems walking. Problems that can’t be reversed but can get worse. If you have detected lesions then there is a good chance you will get more !
Go through the range of treatments and choose the best for you.
The earlier you start the better!
My history with MS is a bit like yours except after an MRI showed quite a few lesions I started on Avonex ( one of the first and now least effective DMTs). 18-19 years later - no new lesions. I can still walk ( although not for too long) but, thank god I’m not wheelchair bound and live a fairly good, normal life.
Sorry agin if this is a bit blunt, but my aunt was diagnosed in the days before DMTs and ended up basically housebound and needing so much help. Don’t go there!
Really hoping that you find a DMT that suits you and that you go on to live a happy and fulfilling life.
Thinking further about your post: I think you have already answered your question. Your recent MRI shows new lesions. You might not have any new symptoms but the lesions are actually damage to your CNS. So far the lesions haven’t produced any noticeable effects but there is a real high risk that the next ones will. Whatever you do, don’t allow the next lesions to dictate the quality of your life in irreversible negative ways
I agree with your other replies. Don’t leave it too late… MS can strike without warning and floor you for no apparent reason.
I was diagnosed before DMTs were available but as soon as they were, I was straight back to the neuro to get started. They are not to treat what has happened already but are to reduce the frequency and severity of future relapses. If side effects are a problem, there’s others you can try so don’t let that worry you.
Hello @SDCK
Welcome. Happy new year. I’m on the fence with this one. I know I’m in the minority.
Like you, I had the optic neuritis and got diagnosed not long after. I actually held off staring DMT for a number of years after initial dx.
As a long-term RRMSer, I felt no need for conventional medicine in the early years. Once I started on my first DMD though, I did notice I had more relapses/flare-ups being on it than not being on anything whatsoever.
Please don’t let me put you off giving it a try at least, if it works for you then that’s great but, I have met another long-term sufferer who has not yet tried DMT and is doing okay without. There are probably others out there too.
It is your choice when to start DMT, at the end of the day.
I’ve chosen to completely stop taking any of them now, because the DMDs started giving me more unwanted side-effects than good-effects.
Idk maybe I’m just the exception. I always bear in mind for every treatment available for multiple sclerosis I’ve tried, there still is no cure yet, I wish you good luck with your decision.
Best regards,
JP
Thank you all for taking the time to reply and thank you so much for your advice! Based on your comments and the research papers from the DMT trials, it really seems the prognosis is so much better when treatment is started early.
@muchthesamemuchness thank you for sharing with me. I also appreciate your input and hearing about your experience. This is what I am really worried about. I’m worried that I will do worse on the DMT compared to no treatment (at least for the next 5-10 years). I was also told that if I start DMT and decide to stop then flare ups are more likely. So I guess my biggest worry is that I would get side effects on DMT then have to stop which will make my condition worse. How are you feeling now that you’ve stopped taking them if I may ask?
Suppose everyone has different opinions but having seen first hand what this disease can do to a family member I was committed to start asap
We are at a point in time where medicine can help us unlike 30 years ago
If I was you I would start but that’s just my personal opinion
Good luck whatever you choose
Hi @SDCK
I had just the one mini-flare up, 5 months after I called it quits on DMTs for now.
After 25 years of having this rotten disease, I’ve become accustomed to riding out most flare-ups just with painkillers and physiotherapy exercises.
If it’s a heavy one though and only occasionally, I know it’s probably time to head to A&E for another prednisolone steroid top-up.
Don’t get me wrong I’m not anti-DMDs, it’s just I don’t believe it is one-size-fits-all for these powerful medicines, as every MS sufferer is uniquely different.
All the best,
JP
I’m not quite sure why I’m taking a particular interest but I do urge you to start treatment. If you start on a treatment that gives you too many side effects then you can change to another one!
I use Avonex - one of the early and least effective ones. The side effects are feeling that you are recovering from flu for 24-36 hours but so what! Ive often felt worse after a ‘good’ night out!! I just take paracetamol and carry on pretty much as normal.
What makes you think you will do worse on a DMT compared to not using one. A bit unlikely I think - ask your MS Nurse about that