MS After the Ten Year Mark: The Future
A few years back, I wrote an article about the “The Differences With MS After The Ten Year Mark”. Basically, it explains my personal differences between my first decade of MS and the time after that. In short, there were some big differences, from occasional exacerbations and still running marathons in the first ten years, to a more steady decline and being put on disability after that.
Not fearing that ten-year mark
This story, despite being my personal experience, resonated with a lot of people who had a similar progression as me. Many of these people, myself included, often feel a bit left out in many of the overly positive, newly diagnosed narratives that are so often put forward by groups like the National MS Society (inspirational stories are fine, but they don’t tell the entire picture, they don’t cover every MS demographic. For many, realism and camaraderie of someone who “gets it” is more helpful than something uplifting). While my “after ten years” story was helpful to and resonated with many, I realize that it can also be scary to some (particularly the newly diagnosed). So I want to address this: I want to talk about how things are different now, how you don’t need to fear that ten-year mark if you’re newer to this disease than I am.
Times have changed
Bottom line, as much as people complain that there isn’t a cure and as much as they want to blame “big pharma”, science has made some amazing breakthroughs since I was diagnosed (nearly 20 years ago). Back when I finally got the call confirming it as MS, I had very few options for treatment - essentially just the injectible interferons (Avonex and Copaxone, with no such thing as an autoject either). Even if there had been more options, for the longest time, doctors would start with these before considering something stronger and potentially more effective.
The treatment landscape is so much bigger
These days, most MS specialists will actually go right to the more advanced and effective meds (if the person can tolerate them) like Tysabri, Ocrevus, Gilenya, etc. These medications work to slow progression, so the sooner you start, the better the chances of limiting the disease’s effect on you. Even if you can’t tolerate those, there are so many more options you can try than when I was diagnosed. So it’s true, there is no cure yet, but wow, the treatment landscape is so much bigger. I have no doubt in my mind that if I had been started on something like Tysabri 20 years ago, that I would not be disabled now. My entire life would be different, I wouldn’t even be writing this. That’s a pretty big deal to me. I’m jealous of, but also happy for, those with MS that are coming after me (as long as they are not distracted by the war on science). We need to keep fighting for a cure, but there has been some success. Those MS Walks have absolutely contributed, we should be proud of that and keep it up. Few diseases have had the amount of breakthroughs in the amount of time that ours has, and that’s with a smaller group of people. Remember that when it’s time to get people to donate.
While I believe a disease modifying medication is critical, those aren’t meant to help with symptoms that already happen. Most folks already have some form of exacerbation/relapse/attack before they are diagnosed (also, at the time I was diagnosed, it was common to require two such episodes overtime before they’d considered MS, let alone start a medication), which can lead to some damaged myelin and some symptoms forever. One of the greatest areas of advancement with MS since I was diagnosed is that it’s finally recognized that MS treatment requires more than just a good neurologist. We’ve finally accepted the role of speech, physical, occupational, and psychiatric therapists. When you have MS, you really need a team of professionals to aid in your care. This isn’t a passive disease, you can’t simply sit back and take a medication. You need to be active and work with these types of professionals because they can make a huge difference in your life. We are at a point where the neurologist is only one component of this comprehensive team approach, that’s certainly something that did not exist in much of my life with the disease and it makes a massive difference in people’s lives.
Your post ten years will be different
While my story of the differences between my first ten years and after that is important and reflective of a large population of those with MS, things are changing for the better. What happened with us likely won’t happen to you. Finding the right MS team for your care is critical. The majority of people will have a much better chance of minimizing their disability level in later life by following the comprehensive treatment guidelines laid out by the National MS Society. Go with what’s proven (and be wary of anecdotal and alternative “cures” and treatments, one area where the internet can be dangerous with misinformation).
Everyone with this disease is different
Also remember that everyone with this disease is different, with a potentially different course. Try to keep in mind that there are a lot of us out there that haven’t had the opportunities you have in front of you. We’re happy for you, but need to talk about our course with the disease too. Remember though, the future of having MS is bright, no matter how it feels at times. If you are new to this disease, this is not a time to be afraid. This is your time to shine: if you work at it, you will do well. No matter how the disease has affected you, always remember you have people here that understand and have been through it. Understanding that you aren’t alone is incredibly important, no matter when you were diagnosed.
How many specialists did you see before finding "The One"?