Why is there so much ageism prevalent in most things to do with MS? Too old for treatment, too old for trials, too old to expect new drugs and so forth. PPMS is already deeply overlooked so combined with ageism it’s like a perfect storm.
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Hello, unfortunately that’s how it seems at times but everything nowadays boils down to cost/effectiveness and value for money
You’re raising a very real and often frustrating issue, and many people affected by Multiple Sclerosis—especially Primary Progressive Multiple Sclerosis—share this concern.
Part of what feels like “ageism” comes from how the disease behaves and how treatments have been studied. Most MS therapies were originally developed and tested in younger patients with relapsing forms of MS, where inflammation is more active. As people get older, the disease tends to become less inflammatory and more neurodegenerative, which unfortunately makes many existing drugs less effective. Because of this, clinical trials often set upper age limits to reduce variability and improve the chances of detecting a treatment effect—not necessarily because older patients don’t matter, but because the science is more complex.
That said, this creates a gap. Older adults and those with progressive MS are underrepresented in research, which then limits evidence for treating them—a cycle that can feel very much like exclusion.
There are also practical considerations: with age, there may be more coexisting health conditions and higher risks from certain immune therapies. Clinicians have to balance potential benefit against safety, which can sometimes lead to more conservative decisions.
However, your point is important—this shouldn’t translate into people feeling dismissed or “written off.” There is growing recognition in the medical community that more inclusive trials and better support for progressive and older patients are urgently needed.
In short, it’s not supposed to be age-based neglect, but a mix of scientific limitations and risk considerations. Still, the outcome often feels the same, and it’s an area where care and research absolutely need to improve.
Thank you for your reply and information. I understand what you are saying however I am still convinced ageism is at play. Whenever I’ve been told by any HCP that I’m too old for treatment or a trial they seem relieved that they don’t have to deal with either what they would consider to be an oap and if PPMS is involved it’s nothing we want to do, oops sorry, nothing we can do for you. Without any doubt I have been discriminated against because of my age. The older people and those with PPMS are just being ignored IMHO and first hand experience. There will always be PWMS that are over 60 either diagnosed late or have had MS for years. This is never ever going to change so why ignore us?
Yes it angers and upsets me as it seems they can’t be bothered so they can concentrate on younger sufferes without PPMS.
Doesn’t make it right or acceptable. It’s only after pressure from those with Progressive MS that a lot more effort and research has been put into it here in the UK.
I agree with you 100%.
I’m 69 and was diagnosed 20 years ago with PPMS.
My famously abrupt neurologist told me there was no cure and no treatment. I felt like he’d told me to go home and wait for paralysis.
He does my annual review by phone now, but I only get that when I contact PALS to ask why I’ve not had a review in 18 months. He usually grants me a couple of minutes to reiterate theres no treatment and no cure, it’s like he’s afraid I’m going to ask for something and he’s going to get in first.
I had a course of IV steroids soon after diagnosis which did nothing for my symptoms but left me constipated and unable to sleep for about a week.
I read about trials, not eligible, or new drugs, again not eligible.
I pay for neuro physio because it’s not available on the nhs.
I’ve deteriorated steadily, can’t walk now, and I don’t think it’ll be long before I can no longer weight bear to transfer.
The only part of the nhs to have helped me is Urology with regular Botox injections for over active bladder.