As a notorious over-sharer and MS blogger, I get asked all the time what medications and therapies I recommend to treat my MS. So when Med-IQ, “an accredited medical education company providing exceptional educational experiences for physicians, nurses, pharmacists, and other healthcare professionals,” wanted to partner with me on this subject, I thought, this is a good idea, because I am not an accredited medical company providing educational experiences for physicians, nurses, or anyone else.
Plus, they’re totally paying me to say that; this is a sponsored post. (But don’t worry, I looked into it, and Med-IQ’s story checks out.)
When I was first diagnosed with relapsing remitting MS (RRMS), one million years ago, my doctor sent me home with four pamphlets, instructing me to read them and figure out which disease-modifying therapy (DMT) I wanted to take. I had only heard about MS for five minutes, and I was being asked to make what felt like a colossal life decision.
So, I was like, “Uhm, excuse me Raymond, but shouldn’t this be your call? I studied music and binge drinking in university. You are literally a brain surgeon, and I’m feeling a little under-qualified to, you know, make decisions about NEUROSCIENCE.”
Turns out, Raymond and I were not on a first name basis.
Since then, I’ve learned a lot about MS, but I’m still no brain doctor, and that is why you should not ask me which therapy you should take. The good news is, I can help you figure out how to know which therapy is right for you. As always, this is not medical advice. Do your homework and talk to your doctor.
One of the first things you learn in MS Boot-Camp is that everyone’s MS is different. Like so, so different. If you had a twin with MS, their disease course might be the Danny DeVito to your Arnold Schwarzenegger. Heck, your own MS may not be the same from one year to the next. Which is important to remember, because nowadays there are a lot more than just four MS therapies to choose from, and there is no one-size-fits-all medication. You need to find the treatment that works for you.
Spoiler alert: There’s still no cure for MS, and none of the available treatments are perfect, which is why you continually need to ask yourself if your treatment is working for you. Disease modifying therapies do just that – they modify the course of MS. They slow it down, but they do not necessarily stop it.
What to consider when choosing a DMT:
Decide what kind of patient you want to be, and make sure you have a doctor who is on the same page; one who will work with you to make decisions about your health as a team; one who will take the time to explain your options; one who is comfortable prescribing a variety of DMT’s; one who will respect your level of risk tolerance; and one who will consider how aggressively you want to treat your MS.
When I went back to Ray and told him which treatment I’d chosen, he said, “No. This one is better.” And I was like, “Dude, what the hell? I spent the past two weeks agonizing over this.” I’m not sure if my doctor was trying to make me do my research, or if it was some weird test that I’d failed. We had a little tête-à-tête, and ultimately he was able to convince me why his choice was the right one at the time.
MS takes a village, but the most important person on your care team is you.
Managing MS is a life-long commitment, but you don’t owe your DMT any monogamy. Once I started having relapses on the drug R-Dogg had chosen, he switched me to the medication I had initially selected. I felt pretty smug about this; like, maybe I could be a neuroscientist after all.
Being on treatment means constantly determining whether or not your therapy is working for you. This means undergoing annual MRIs to look for new lesions, attending regular follow-ups with your doctor, and paying attention to any changes in your body that could be signs of new disease activity.
Let’s face it; none of these drugs are easy; MS is a tough disease. All of the therapies carry side effects and varying degrees of risk. People stop treatment for many reasons. Maybe you feel like your MS is under control, but your quality of life is being impacted by side effects. Maybe you’re sick of needles, or headaches, or hair loss. Maybe you don’t like your doctor.
If you’re feeling treatment fatigue, or frustration with your physician, better to find a new doctor and consider a new DMT than to just ghost either of them completely. MS can escalate quickly. Stopping treatment without a plan or the care of a doctor can lead to serious consequences.
Wait and see?
Some people decide to go without treatment for their MS; or to wait until symptoms get worse before taking action. This is an older approach to MS that is less popular now, because we know that early intervention equals better outcomes. If you do choose the “wait and see” approach, it’s important to remember that even if your MS feels more manageable than treatment would, things can change at any moment, and damage may be irreversible. Even if you feel good, MS can silently be wreaking havoc.
Managing MS successfully means being a proactive patient and participating in your own care. You don’t have to be brain-surgeon smart to do this. Listen to your body, ask questions, and find your own Raymond – the neurologist who will listen to you, respect you, work with you on treatment decisions, and pretend not to be annoyed when you call him by his first name.
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7 thoughts on “How To Choose The Right MS Therapy…For You”
Good advice all around. If I might add my two cents, US patients my also want to use the "Dollars for Docs" website (google it) to see how much money their own neuro takes from each individual pharmaceutical company hawking MS drugs. I know it might come as a shock (not), but many MS neurologists here in the states receive exorbitant amounts of money (read: bribes) from Pharma companies in the form of "speaking fees" or "honorariums". Don't be fooled, these are mostly BS excuses for lining the pockets of doctors who prescribe their drugs.
If your doctor shows up with an astounding amount of money coming from one of the Pharma companies and he just so happens to be recommending their drug over all others, it might be time for a frank conversation with him/her. My neuro, who doesn't even allow pharmaceutical company reps into his clinic, says that MS neurology has become something of a brothel, with many of his compatriots basically on the take. Just a word to the wise… And, yes, I am jaded…
Great point, Marc. I wish this existed in Canada.
Do you still see Raymond? He, kind of, sounds like a douche. The neuro that dx’d me slapped my MRI up on the white board and said ‘yep, you have MS.’ He then handed me a booklet about DMD’s and told me to come back in two weeks with my decision. No lie and no exaggeration about how I was dx’d! I don’t see him anymore.
I don't see Ray anymore because we moved. He's def not the warm and fuzzy type, but not a douche either. He's an excellent doc who provided me with great care for a long time.
Your dx story isn't unusual, unfortunately. I learned pretty early that my neuro wasn't really capable of providing emotional support.
Without the benefits of kids, career, money I have opted to continue on just diet and physical activity as a therapy. I am 56 and might see treatment differently if all of the above were not working in opposition to my aspirations.
My primary care doc told me if I could find a neurologist I didn’t hate, I’d be doing great. I think I only saw the neurologist twice and talked to him on the phone twice. He insisted I have a spinal tap, which I refused. I never went back. I decided to see a functional medicine practitioner and have radically changed my diet and take a boat load of supplements. I just found your blog tonight so haven’t had a chance to read too much. Have you seen a functional medicine specialist?
Finding the right neurologist is so important. It is a long relationship and it’s important to have someone who shares the same treatment philosophy you do.