So, I Did Something a Little Bit Crazy…

There is a great deal of evidence that diet is an important factor in controlling MS symptoms. Most of this evidence is anecdotal in nature, but there are some small-scale studies providing better quality evidence on the importance of diet for MS patients. There are a lot of so-called “MS diets”, but many of them contain conflicting advice. For example, The McDougall Diet is a plant-based diet which advocates for eating whole grains and a wide assortment of vegetables and fruits, and which excludes all animal foods, including red meat, poultry, eggs, fish, and dairy, whereas the Wahls protocol is a modified Paleolithic diet which advocates the elimination of gluten, dairy, and eggs, and advocates for the regular consumption of organ meat in the diet. There are many more too: the Best Bet Diet, the Overcoming MS Diet, the Swank Diet, the Ketogenic Diet, intermittent fasting, and that is just to name a few. In short, dietary advice for MS patients is difficult to navigate. Further, while there is evidence that diet may aid in symptom relief, there isn’t any strong evidence to date that demonstrates that diet can actually modify the disease course for MS.

Can one’s diet serve as a Disease Modifying Therapy (DMT)? Can diet reduce relapse activity? Can diet reduce brain shrinkage? Dr. Wahls and her team want to answer these questions. I want an answer to these questions too. Dr. Wahls is conducting a truly cutting-edge study to attempt to answer these questions. What is the crazy thing that I did? Well, I volunteered. I have been selected to participate and I am among 52 MS patients who are already enrolled in the study. Dr. Wahls is recruiting for another 104 MS patients to participate. If you are reading this and you are interested in participating, you can find more information here: https://wahls.lab.uiowa.edu/sites/wahls.lab.uiowa.edu/files/wysiwyg_uploads/20220707_-_edq-ms_-_recruitment_study_brochure_-_paper_copy.pdf

How did I learn about this study? I listen to a number of MS podcasts and Dr. Wahls has been making the rounds to recruit for the study. I first learned about it from the FUMS: Giving MS The Finger Podcast, so credit to Kathy Reagan Young for piquing my interest.

What does this study entail? The study seeks to compare the effects of three different diets – a Modified Paleolithic (Paleo) diet, a time-restricted Ketogenic (Keto) diet, and the usual North American diet supplemented with educational materials on nutrition (control group). To participate, I had to agree to be assigned to any of these three groups at random. I will have to follow my assigned diet for 2 years. I will be continuing all of the other interventions that I am currently doing, i.e., taking Kesimpta, taking supplements, exercising regularly. The study is being conducted by the University of Iowa, and I will have to attend Iowa City on 3 occasions – once for my baseline visit (this is scheduled on December 30, 2022), once at 3 months, and once at 24 months. On each occasion, I will undergo physical assessments and blood testing. During my baseline visit and my 24-month visit, I will also undergo an MRI. This is the most exciting component of the study. They are actually evaluating whether the dietary interventions reduce lesion activity and brain volume loss over a lengthy period of time. No other study has ever done this.

MS studies with MRIs are not uncommon, but they usually involve drug interventions. Without the financial backing of a large pharmaceutical company, it is hard to conduct the type of study that Dr. Wahls and her team are conducting. This study involves 312 MRI scans. The cost is significant. I tip my hat to Dr. Wahls for securing the funding to make this important research happen.

I volunteered for this study for a few different reasons. First, I don’t like to complain about problems that I am not willing to help solve. I’m not a neurologist or a dietician, so I won’t be solving the question of “what is the best diet for MS patients” on my own. But I am an MS patient of sufficient financial means to incur travel costs and increased grocery costs, so I can participate and help people much smarter than I am in getting to the bottom of these questions. Second, I volunteered out of my own self-interest. If adhering to a Keto or Paleo diet will slow down my disease course and leave me with less disability, I want to know about it. Finally, I volunteered for my fellow MS patients and for those who will be diagnosed with MS in the future. I am acutely aware that my blood relations are at an increased risk of developing MS. I worry for my son and my nieces. If this study provides us with intel on how diet can manage MS, it might also help us with understanding how diet can help to prevent MS.

I was shocked to learn that only 52 people have been enrolled in the study so far. However, I think that I underestimate how difficult it is to find people who are both willing to keep eating their normal diet or do something as extreme as Paleo or Keto for 2 years.

This isn’t a perfectly designed study, and it isn’t going to answer all of my nutrition questions for living with MS. For example, if dairy is the underlying culprit contributing to MS activity, we won’t know that from this study, as the group eliminating dairy is also eliminating gluten, eggs, and sugar. But if one of the diet groups outperforms the others, it will serve as the foundation for further research. I also appreciate the risk that Dr. Wahls is taking in pitting her diet against a competitor and a control group. This study may show that for all that diet may aid in symptom relief, it doesn’t alter disease course, or it may show that Keto is the diet that alters disease course the most. As the author of The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles, it would be contrary to her interests for Keto to win out in this study.

I am feeling both excited and nervous as December 30th approaches. I keep dreaming that I have been assigned to the Keto group (something my subconscious brain is likely dwelling on as it would be my bottom choice if told to pick between the three groups… 2 years is a very long time to follow a Keto diet without any breaks). I also keep dreaming that I have slept in and missed my baseline visit, resulting in me waking in a panic (my subconscious brain is definitely keyed in on how important I view this study to be). I can hardly wait to find out to which group I have been assigned. I will try to focus on the positive of whichever group that I am assigned. For instance, for all that I don’t want to be assigned to the Keto group, I will try to focus on enjoying still being able to eat eggs and cheese if I do in fact get assigned to this group.

So, dear friends and family, I may soon be a very annoying dinner guest. I will be assigned to my diet group when I attend Iowa City at the end of this month, and I will immediately begin following my assigned diet, be that Paleo, Keto, or status quo. I am so grateful to my husband who quickly signed on board when I brought up that I was interested in participating in this study. I am lucky to have supportive friends and family who understand me, even when I do things that are admittedly a bit crazy.

True to my millennial status, I love avocados. It’s a good thing, because they will be a staple if I am assigned to either of the study diets.

I am once again participating in the MS Walk with the MS Society of Canada. If you would like to join my 2023 team or donate, you can do so here: https://msspwalk.donordrive.com/index.cfm?fuseaction=donordrive.team&teamID=9264. Thanks in advance to everyone who supports me and my team.