Finding Balance: Creating an MS Diet for My Whole Self

I tried so many diets to try and manage my multiple sclerosis symptoms. I learned that perfect adherence was less important than honoring my needs.

One day, my 10-year-old daughter sat on a wooden stool at the kitchen counter, swiveling side to side. “Mom,” she asked, “If MS were cured, what would be the first thing you would eat?”

She often asks some variation of this question. It’s our version of the “last meal” question: If you were facing execution, what would be your last meal?

I leaned over the counter, my elbows bent, tidying her stray curl as I paused a moment in thought. I imagine lying on a picnic blanket with her, I say, our bare feet on the grass. In front of us is a plate of Camembert, some fruit, and a French baguette with a crispy crust, soft and warm inside. Last but certainly not least, I remove from the basket a lovely fruit tart with glazed berries, kiwi slices, and mandarin oranges on top, with custard filling and a flaky crust.

I haven’t eaten like that since before I was diagnosed with multiple sclerosis (MS).

But when I was diagnosed, as a sophomore in college, I was determined to live my best possible life with MS. With encouragement from my mom and my grandmother, I began looking at whether dietary changes could help.

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My first ‘MS diet’

Shortly after I was diagnosed, I began reading about the Swank diet, which was very popular at the time for addressing MS symptoms and had some clinical testing behind it.

My mother volunteered to be my diet buddy, and we dove right into it. Using Roy Swank’s “The Multiple Sclerosis Diet Book” as our guide, we cut out trans fats and limited saturated fats, along with refined carbohydrates and sugars, and processed foods.

I went to parties and turned down cakes, chips, brownies, candy, and oh so many baked goods. It stung a little to miss out on eating these things socially, but I was willing to make the sacrifices if it meant feeling better.

And the diet seemed to be working. I wasn’t experiencing symptoms of MS on a daily basis. However, I experienced a relapse 2 years later. After the relapse, I had unpredictable trouble with walking. It was substantial enough to make me withdraw from classes.

I felt like I wasn’t doing enough. I had been told that my MS should be mild on medication, but it seemed something was wrong. I didn’t understand why I relapsed, or that my current medication might not be the correct one for me. I started looking into other holistic wellness practices with my mom. The search was on.

I’ve tried everything, man!

Over the next 5 years, I tried a lot of other purported MS diets and anti-inflammatory diets. I’ve tried so many that I could create a spin-off verse to Johnny Cash’s “I’ve Been Everywhere, Man.”

These included:

• a yeast cleanse diet
• a Tibetan lungta diet
• an acid/alkaline diet
• the Best Bet Diet

“I’ve tried everything, man!” Or at least it feels like it.

As I rotated through these various diets, I found that some were too hard to stick to or too complicated, and didn’t seem to be helping my symptoms.

Too much, too fast

I tried the Wahls Protocol 5 years ago. This is similar to the popular Paleo diet.

This diet was developed by Dr. Terry Wahls, an internal medicine physician who was diagnosed with progressive MS, but claimed that following this diet reversed many of her symptoms and enabled her to regain her ability to walk. As a result, the diet has been popular for many years in the MS community.

The Wahls diet focuses on eating lots of meat, fish, vegetables, fruits, and fats — and avoiding dairy, grains, legumes, nightshade vegetables, and sugar. It has three levels, with each level becoming increasingly restrictive. This helps beginners ease into the diet.

But I wanted to heal myself as quickly and efficiently as possible, so I dove into the Wahls diet headfirst, quickly progressing through the three levels. This was a mistake.

At level 3, you’re supposed to transition to a keto diet (almost no carbohydrates at all) with intermittent fasting. I eagerly embraced this and, in the process, ignored some things I already knew about myself, like my tendency to have low blood glucose levels, and keto only made that worse.

I began to experience some digestive issues that I hadn’t had for quite a few years, like constipation and episodes of incontinence. I also was underweight. I clearly needed to listen to my body and transition to what was best for me.

My pursuit of perfection

If only it were so easy. My quest to eat the best foods for my condition led to an unrealistic and fatigue-inducing push for perfection. It was then that I realized I was experiencing disordered eating.

When I was too fatigued to eat the best foods, I went without food altogether. It wasn’t even that uncomfortable. Having been raised in a religion that teaches fasting for two meals, once a month, I knew how to focus on things other than hunger.

During this period, I had a routine blood test, which suggested I had hypoglycemia (low blood sugar). I didn’t feel unwell. I didn’t faint. The low reading was chalked up to medical error. But when we tested my blood again, it was still low.

This was clearly something that needed to be addressed. More than anything, I needed to eat. I needed to let go of the quest for perfection in the foods that fueled my body. I’m a busy and disabled mom, and mama needs to eat!

My primary care doctor advised me to eat five small meals a day to manage the hypoglycemia.

Customizing for my needs

I realized that one of the best things (for me) about the Wahl’s diet was the ability to customize it to my own lifestyle and nutritional needs.

It was hard to shake the feeling I had failed to achieve the best possible outcome, but I realized I needed to do what was best for me.

I adapted and dropped back to level one of the Wahl’s diet, which cuts gluten but allows some gluten-free grains. While it eliminates dairy and eggs, it encourages lots of vegetables and fruits, with an emphasis on dark colored produce.

Though my MS symptoms still fluctuate from day to day, I’ve noticed a general improvement in some, like fatigue and cog fog. I feel like I routinely have more energy and more control over these symptoms when I eat well.

I’m also having fewer hypoglycemic episodes.

I now try to make sure I always have certain foods on hand, like nuts, fruits, sodium nitrate-free dried fruits, sunflower seed butter, and other things on the Wahl’s diet that make getting healthy calories more convenient.

I realize that while this diet works for me — with my modifications — there’s no diet that is universally recommended for people with MS. Instead, experts recommend a Mediterranean-style diet, with an emphasis on whole grains, lean proteins, healthy fats, and fresh fruits and vegetables.

Many doctors also recommend vitamin D for people with MS.

While I do my best to eat healthful foods that fuel my body, I no longer beat myself up if I eat what I used to consider a “forbidden” food. That means that when I’m divvying out snacks for the kids, I may have a few Doritos. And I enjoy every bite.

The takeaway

MS diets can be difficult, especially at first. It’s hard to completely change the way you eat when you’re already experiencing so much change from your disease. We need to view our journeys for better nutrition with grace.

It doesn’t matter if we sometimes have less than the best meal. It’s OK. Keep trying. This is a journey, and it’s a hard one. Seek out the middle path.

Stay in close communication with your doctors and healthcare professionals about any dietary changes you make, so that if you do experience a negative consequence, they can help you manage it.

Enjoy the healthy foods you can eat, and eventually, you may find you don’t miss your pre-MS diet.

Make it a priority to purchase healthy treats. I still fantasize about that ideal picnic, but now it would include a cashew cheese alternative with a gluten-free baguette and berry tart — or in a pinch, a dark chocolate bar and berries.