MS Misconceptions: Why We Take DMTs
One might think that living in this day and age, with information right at our fingertips, that some of the basic facts regarding multiple sclerosis would be easily understood. That’s far from the case though, with misconceptions about nearly every aspect of the disease permeating both the internet and doctor’s offices. Sometimes, it’s not only misinformation, it’s also when some facts are the opposite of what we are used to. Such is the case when it comes to the purpose of disease-modifying therapy (DMTs). Many people expect DMTs to work magic on their symptoms, but that’s simply not their purpose.
The purpose of DMTs is to slow disease progression
A lot of folks understand the purpose of DMT, which is to slow down the progression of the disease. That’s really it. Their purpose is not to help you with your everyday symptoms. While many do recognize this, I encounter a large number of folks who haven’t had it explained properly to them. It’s unfortunate, but there aren’t enough doctors out there that specialize in MS. Even among those that do, there are still a fair number that don’t keep up with the latest research and suggested practices.
MS research is moving fast
Multiple sclerosis is a disease where research, whether it seems it or not, is moving fast. To effectively treat patients with the disease, a doctor has to be on top of his game and rely on a lot more than what he’s learned in the past. Not every doctor is as up to speed on the disease as they may sound. Sometimes it’s not even their fault, the speed of progress with this disease is just that quick (again, I know it doesn’t always seem that way). It certainly seems to me, from talking to others with the disease, that not enough doctors properly explain the purpose of disease-modifying therapies.
Experiencing MS symptoms while taking a DMT
Another reason people have a hard time grasping the concept of DMTs is because it’s somewhat counterintuitive. Most folks are used to taking a particular medication when they don't feel well. Have a headache? Take some aspirin. You’ve got a rash? Benadryl it is. Diarrhea out of control? Reach for the Immodium or Pepto. We have a symptom and we take something to treat it. DMTs don’t work like that. Which leads many people to think poorly of them. I’m still super fatigued, so why am I still taking Copaxone? I still can’t walk properly and keep falling, so what is the point of the Tysabri I’m taking? We’re so used to taking a medication for something that ails us, that it’s easy to turn on DMTs when we are still experiencing old symptoms.
Some people stop taking their DMTs when they feel fine
While some people abandon their DMTs because they are still experiencing symptoms from previous exacerbations, others do the same when they are feeling fine. Many people stop taking their DMTs because they feel fine and are symptomless, which then allows the disease to work silently until they suddenly have another exacerbation. This kind of behavior has led to increased disability for people later on, folks who felt fine and thus thought they didn’t need a DMT. We aren’t used to taking medication when it feels like nothing is wrong with us.
DMT side effects
This situation is made tougher by the fact that many DMTs have side effects that come along with them. Suddenly, it feels like you are inducing these side effects for no reason at all. The unpredictability of the disease doesn’t help either.
MS is different for each and every person
While rare, it’s true, some folks may have an exacerbation and never have any other issues. This disease can be so different for everyone, if you are feeling fine, it’s easy to be tempted to think you might be one of those people that only experiences a mild course. Maybe you will, but I’ve also witnessed the long term results of not taking a DMT when the disease wasn’t mild and it was upsetting. That’s what makes me passionate about this topic.
Preventing disability later in life
So between misinformation, counterintuitiveness, and feeling fine, it’s easy to see why so many people stop taking disease-modifying therapies. The thing to remember though is that we take them to prevent disability later in life, not to make us feel better right now. Once that myelin around our nerves is damaged or destroyed, we have nothing that can repair it. That makes prevention extremely important. Even if you understand that, it can be a hard thing to live with. Whether you feel crappy right now or feel fine, both seem like reasons to stop taking a DMT. This makes taking a DMT a tough choice for a lot of people. That’s just one more thing about this disease that seems unfair. We don’t have a one-stop treatment that will both make us feel better and stop our disease from progressing. Unfair or not, it’s important to understand that when making a decision on treatment.
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