MS Diets vs DMTs: A community divided

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As anyone living with MS knows, everyone’s disease follows its own course. We are all different. Our bodies are different. Our triggers and environments are different. Our food sensitivities are different. Our symptoms are different. Our treatment plans are different.

Choosing a treatment plan is an individual choice. It can be a difficult decision for some to make. Many people join support groups to discuss important matters like this one with others going through the same thing. Support groups are a place to share our concerns, fears, and experiences and hopefully receive helpful feedback from our peers. Lately, I’ve noticed a troubling trend when the topics of DMTs (Disease-Modifying Therapies) and MS Diet questions are posted. There is a noticeable, Us vs Them, mentality and a backlash of antagonistic comments if someone doesn’t agree with the way someone else chooses to treat their MS.  This is so unnecessary and so sad. Isn’t it enough that we are all doing the best we can? Many of us are trying to eat well and live better; why not support each other and do it together?

We should be able to ask questions about diet or medication without fear of judgment. There’s a difference between offering an opposing opinion and having a conversation about it or launching an attack because someone doesn’t agree with your ideals. I suggest we try to remember we are all on the same side and be more considerate when responding to people. When did talking to each other become so hard?  Whether a person chooses a holistic approach, medication or a combination of both, we all want the same thing; to get better, to feel better.

I think people have the best intentions. Some have done so well with whatever treatment plan they have chosen that they want to share. Personally, I love when people share their success stories and secrets because that’s what I want to hear! I want to know what people did to reverse symptoms or get rid of lesions. I want to hear about mobility or function that has been restored. I realize that these are the big things and that there are far more smaller victories like figuring out how to shower without complete fatigue or getting dressed without falling over. I want to hear those stories too. I find them inspiring and they motivate me to stick to the plan I’ve chosen. I just feel that everyone should be able to share whatever victories or problems they are having, knowing that they are in a safe space to do so.

I’ve had Multiple Sclerosis for over 18 years. I joined my first online support group a few years ago when I realized nobody understood what it was like living with an invisible disease, and I felt alone. It was so refreshing to talk to people who instantly ‘got’ me. For many people, support groups can be a lifeline and right away, I saw the value of being a part of the MS community.

I found myself mostly on MS wellness-based support groups as I’m constantly trying to learn and implement better ways to improve my overall health. I’m always advocating for healthy diet and lifestyle changes to build a strong foundation for the body and to improve MS symptoms; so people are sometimes surprised that I take medication.  I truly believe that the body is designed to heal itself, but I didn’t always think this way

When I was first diagnosed with MS, I was so shocked that I had a progressive disease with no cure that I didn’t ask a lot of questions. I just wanted to be able to see and walk.  I wasn’t thinking long-term projections, I was thinking, fix me now!! I hadn’t yet learned that Multiple Sclerosis wasn’t that simple. In the early days, I did ask about diet and exercise but was told it wouldn’t help. When medication was offered, I took it. Side-effects never crossed my mind; I was too sick to care.

Looking back, if I knew then what I know now, I may have done things differently. My life might be different. I made the best choice I could at the time and I’m alright with that. I could change things now, and I am. I learned without proper nutrition the body lacks the raw materials it needs to heal.  I chose to make radical diet and lifestyle changes. That was nine years ago. In my heart, I’d love to be medication free, but I also want to stay well. I’ve been moving slowly in that direction, but my body doesn’t always do what I want it to do.

I’m sharing this to demonstrate that we don’t know why people make the choices that they do and there is more than one path to wellness. We are all different, yet we face the same challenges.  MS diets, medications, side-effects; are big topics and we need a place to talk about them. Can we all agree to disagree respectfully?

I am very grateful to be a part of the MS community and I value the opinions of our tribe. Just a gentle reminder that support means to lift each other up! Who agrees?

If you would like to learn more about living well with MS, feel free to join the MS Wellness Project support group: https://www.facebook.com/groups/MSWellnessProject/

4 thoughts on “MS Diets vs DMTs: A community divided”

  1. I was diagnosed in 2000 just before my 30th birthday…I was on Avonex for 9 years.I had a lot of relapses early on…at least 1 a year. I did a stint of IV steroids every other month for 6 months. Did lots of PT to keep moving Tried Tysabri and Copaxone was allergic to both and hung on til Gilenya was available, about 9 years ago…..lucky to only have 1 relapse early on Gilenya and none since but I wasn’t feeling really different. Fatigue was always kicking my ass…I never thought of changing my diet. Seriously, what difference would food make? Then I saw Terry Wahl’s ted talk and I figured what the hell, what could it hurt? My husband was so excited he bought me a vitamix and the rest is history…It’s been 4 years…and my only regret is that I didn’t change my diet earlier. Started by getting rid of process food then added the good stuff in. I’m still on the gilenya…

    1. Kim, thanks for sharing your story! I think that one of the biggest takeaways I get from hearing about people’s experiences when they start committing to a nutritious diet is that they feel better. That’s good motivation!

  2. Well said. It’s difficult to express different opinions in a non-confrontational tone. We often get argumentative immediately rather than say ‘hey, if it works for you I can respect your choice’. Thanks for writing this.

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