PATIENT VOICES

Finding the Right Diet for My Multiple Sclerosis

It was January 3rd, 2021, at 12:24 AM, and I was in a hospital room. I was experiencing numbness throughout my left arm, plus tightness and pressure right in the center of my chest, making it very challenging to breathe. These symptoms were mimicking heart or respiratory issues. I eventually learned I was experiencing a common multiple sclerosis (MS) complaint known as the “MS hug.” I was familiar with this phenomenon but did not realize it could affect the upper portion of my torso–I thought it could only impact my stomach region. It was just one more surprise symptom of MS to add to the list.

What caused this hospitalization, you ask? It was saké, a type of Japanese rice wine. A food additive called monosodium glutamate (MSG) causes me to have severe MS flares, but I had no idea there was MSG in the kind of saké I was drinking. I thought it was mainly used in foods. Who knew a night of New Year’s drinks could put me in the hospital for five days?

MS is still very new to me, and I continue to learn what foods and beverages I should stay away from to avoid symptoms. Unfortunately, it’s been a trial-and-error process, risking a possible flare every time. Conducting research has helped me narrow down likely trigger foods based on others’ experiences and recommendations. Everyone with MS reacts differently to different foods, but I’m trying to figure out what my body needs as best I can.

Initially, adjusting my eating habits made me sad. I felt that I was losing control of my life. Even the food I eat has to be changed because of this new illness. I miss eating food without a care. However, I do feel much better when I make these food choices. And I do not guilt myself for any mistakes. I know I am human and mistakes happen.

As of now, there isn’t much hard evidence that says a particular diet, like going vegan or trying the Mediterranean diet, can help avoid severe symptoms. Most of what I’ve found is anecdotal and can vary from person to person. Early on, I tried to make some substantial changes to the way I ate. I started a keto diet, but it made my fatigue much worse since I wasn’t providing myself enough calories for my day. Other MS patients have described similar effects after adopting restrictive eating habits. Maintaining a diet is very individualized; it is vital to figure out what works for you.

Personally, along with MSG, I’m avoiding:

1. Gluten. Gluten-free foods are food without rye, wheat, or barley. There is technically no scientific evidence supporting a gluten-free lifestyle for someone who hasn’t been diagnosed with Celiac disease or gluten intolerance. However, many MS patients say reducing or eliminating gluten from their diet helps with their symptoms. I have been reducing my gluten intake, and I have noticed a difference in how I feel.  
2. Saturated and trans fats. Both types of fat can cause trouble for the body. Saturated fats come primarily from an animal, such as red meat. Also, they are found in coconut and palm oil. Large consumption of saturated fats can lead to high cholesterol, hypertension, and an increased risk of a heart attack. Trans fats are in packaged, processed products, such as cookies, crackers, and other sweets. Eating high amounts of trans fat could cause cardiovascular problems. I try to avoid these as much as possible to keep my body functioning well.
3. Sugar. Sometimes, it seems like sugar is in everything. As someone with a sweet tooth, I know it can be hard to eliminate sugar from a diet. However, too much sugar can lead to inflammation and weight gain, which can make MS symptoms worse. Rather than going cold turkey, I have found it easier to reduce the amount of sugar I consume daily as much as I can. Trying to remove sugar altogether is my ultimate goal, but I’m taking it one step at a time. 

Maintaining a new diet can always be challenging. That’s why I’ve been doing it gradually. Sugary sweets have always been my kryptonite, so I started out by cutting down on them little by little. Then I moved on to reducing red meat, saturated fats, and gluten-containing products. I continue to struggle, but I try my best to stay motivated, and I use an app on my phone to track my food intake so I can see my progress. In addition to avoiding certain things, my doctor and other resources have emphasized the importance of eating an overall healthy and balanced diet, in order to reduce additional issues. I want to stay as healthy as possible so my body has the fuel and nutrients it needs to function well.

Of course, this is all very individualized. I’ve learned a lot on my own through research, but speaking to a dietitian can help, too. And of course, discussing your diet with your doctor is a helpful way to determine a plan that is best for you. I am transitioning to a better diet, and although it’s had its ups and downs, I have been feeling better–and that’s worth the challenges.