I’ve had MS for over 38 years, now SPMS but with relapses. I had quite a few years when I just got worse but didn’t have actual relapses. I’ve been in a wheelchair since 2019. In 2023&2024 I had one relapse starting in November each time and lasting about three months. I have never managed to get DMTs and don’t now qualify anyway due to the wheelchair. This year I’ve had three relapses so far with only 2-3 weeks of my ‘normal’ in between. I naively thought when I was told it was SPMS I was past having relapses and am finding it hard to cope with the constant relapses. Last one I tried to get steroids from my GP but he said not without the say so from neurologist and an MRI. Since MRIs have a dreadful effect on me I decided not to go there but I’m finding it hard coping with constant relapses. Having been transferred back to my local hospital from London I haven’t yet seen my MS nurse. I have an appointment in January 2026! I don’t qualify (nor have ever managed to get) DMTs so basically I feel like there is no help for me. I don’t know where to go from here!
The idea that you no longer qualify for DMT’s, just because you use a wheelchair is deeply flawed and surely neuros understand that it’s our hands that keep us independent.
There are a few trials going on for DMT use in advanced MS and might be worth asking your nurse if there are any in your area.
This is an example.
“People with more advanced MS are usually excluded from clinical trials and have limited treatment options. Preliminary studies have suggested that Mavenclad may be an effective treatment for people with progressive MS. Researchers want to find out if Mavenclad can help maintain hand and arm function when people with progressive MS have largely lost the ability to walk.
The aim of this study is to test whether Mavenclad can slow down the worsening of hand and arm function in people with more advanced progressive MS. This study is recruiting 200 participants with secondary or primary progressive MS and an EDSS of 6.5-8.5 (unable to walk further than 20 metres with two crutches or unable to walk at all). There is no upper age limit. Participants should be able to complete the nine hole peg test within 3 minutes and, in the judgement of the investigator, have lost some use of their arms or hands in the last 2 years. Half of the participants will take Mavenclad, half will take placebo. The main measure used in the study will be the time it takes to complete the nine hole peg test at the end of the two year trial.”