I was wondering how people cope without DMTs?
I was diagnosed at 15 & put on gilenya due to MS being active. At 18, I was allowed to go onto ocrevus as MS was still fairly active. I had ocrevus from 2020-2026 (took a break of 2 doses for pregnancy during this time).it had always worked really well for me during this time. In 2026, the ocrevus gave me meningitis and now my consultant says it’s no longer safe for me to have any MS treatments at all.
Does anyone cope without treatment & if so how? I’m a wife/mum/work full time/only 24 years old so have a whole life ahead of me, & I’m worrying how it could impact my life.
1 Like
Hi Bella.
Welcome aboard 
Cor blimey, you have had a rough ride from a young age - especially with meningitis on top of your MS 
Holding it all together working and being a mum, you’re obviously a strong young lady. You deserve to be commended 
I’m still trying to find my way around this thing so, I don’t really know how things are likely to pan out for you but, I suppose 1 thing is certain - it’s not going to get any easier for any of us.
There are more posts on here somewhere about people being taken off their DMT. I think the process after that is to manage any new developments as they happen. Probably with a steroid.
I’m currently on the path to starting a DMT but, I am very interested to see folks replies about managing without medication. (There is some information from an Australian(?) chap that seems to do ok without. I forget his name and where the info is. Someone more knowledgeable than me may post up a link 
Try to hold onto your inner strength - it will help you along 
Best wishes mate 
x
Jon.
Hello @bellaparkhouse I’m so sorry for you . I could well be talking nonsense but is it worth asking your neurologist about one of the least effective and early DMTs which work in ways that are quite different to some of the more recent ones. I’ve been on Avonex ( a very early DMT) for 19 years and it seems to have worked for me. I also follow the general suggestions and advice presented by Overcoming MS - living well with MS . Have a look at the website for advice on diet, exercise and mindfulness/ meditation. The suggestions aren’t instead of treatments but can probably help the body in dealing with MS.
2 Likes
Crumbs, that’s a difficult situation for you. And an unusual one. In your shoes, I would want a second opinion on your case. It isn’t run-of-the-mill stuff at all. As you say, it’s your life and your long-term health, and I think you are entitled to ensure that more than one very experienced expert clinician has talked it over as senior experts do. I’m sure your neurologist is excellent, but this really is quite an unusual case, and I would be surprised if he/she did not welcome the idea that you want to seek another view.
2 Likes