I’m approaching the one year anniversary of my diagnosis with multiple sclerosis, and as you can imagine, it’s on my mind a lot.
Although I don’t know if there’s any way to really be prepared for news like this, I obviously knew that MS was a possibility. I’d been asked a lot of questions about “numbness and tingling” and it takes about 10 seconds and Google to understand exactly what that means.
What I absolutely wasn’t prepared for was the news that I have a progressive form of this disease. The conversation went something like this: “There are two forms of MS. One can be treated very effectively! One has no approved treatment. You seem to have the latter. We’ll hope for the best.”
Hope for the best? I know this doctor was trying to stay positive, but I instantly wanted to do much more than hope for the best. I wanted a solution. Right now. Before anything progressed anywhere.
I understand now that it’s not so simple. MS doesn’t always fit neatly into one of two boxes, and that some medications actually are used to address progressive disease. My current neurologist is incredibly kind and well-informed, and I have complete confidence that she’s going to help me fight hard to stay as healthy as possible.
But the initial shock of being told “you have something that can’t be treated” has really stuck with me, and I continue to be sensitive to this issue as I learn more about MS and the community of people that I’m now a part of. It can be frustrating, to say the least, to see progressive forms of this disease mentioned almost as a footnote in literature or in research.
Whether you’re feeling great right now or facing some hard challenges already, I know that we all want the progression stopped, and maybe even reversed. And that means attention and research and advocacy. Having a progressive disease, however slowly it’s progressing, feels like living on borrowed time. I hope that for me and for all of us with progressive MS, there will be time enough to find some answers.
Katie, thank you for speaking out and sharing your story. Unfortunately, your experience at the time of your diagnosis is shared by countless others in the MS community who are living with progressive MS, and is precisely why the National MS Society has made finding solutions for progressive MS a top priority. We need to be able to tell people something more helpful than, “We’ll hope for the best.”
I’m glad to hear you decided to seek a second opinion from a specialist in MS care – it is essential to have accurate advice regarding treatment options for your MS. While the current disease modifying treatments work best to treat relapses and inflammation, in certain people with secondary-progressive MS, there is some evidence of effectiveness. In addition, early and continuous treatment is currently the best bet against future disease activity. There are also many effective strategies to manage progressive forms of MS. These include symptom management, rehabilitation, exercise, and other approaches.
We share the frustration of people with forms of progressive MS that don’t respond to available disease-modifying therapies. One way we are working to speed new therapies to people living with progressive MS is by examining and testing existing therapies (that have been approved for other conditions) for their potential to stop progression or restore function. This innovative approach has already helped us identify therapies with real potential and is why the Society recently committed $600,000 to a collaborative clinical trial of the oral therapy, ibudilast, in people with progressive MS. Ibudilast has been used to treat cerebrovascular disorders and asthma in Japan and Korea. In a previous trial involving people with relapsing MS, some evidence that ibudilast could protect the nervous system from damage was observed, revealing its potential as a therapy for people with progressive MS.
This is just one example of the new attention that will drive answers in progressive MS. There is for the first time global collaboration and movement to ramp up research in progressive MS that will speed the day when there are life-changing treatment options for everyone with MS. We know there is no time to waste and we will continue to drive collaboration and make strategic investments in initiatives to uncover answers and improve the lives of everyone with MS.
Timothy Coetzee, PhD
Dr. Timothy Coetzee, National MS Society Chief Advocacy, Services and Research Officer, has been a leader in the pursuit of innovative ways to move us closer to a world free of MS since receiving his PhD in microbiology and immunology in 1993.