There is No One Size Fits All Solution: We Are All Different
This may seem obvious to some of us but I realized the other day that not everyone really gets this; what works for one does not work for all. What is good for some people is not good for all people. When it comes to treating people with multiple sclerosis (MS) there is no “one size fits all” solution. Just because a medication works great for me does not mean it will work great for you or vice versa. This even extends to people outside the world of MS; a diet may be really healthy or beneficial for most people but that does not mean it isn’t generally bad for people with a disease like MS. We are all different; people with MS tend to refer to multiple sclerosis as a “snowflake disease” because no two people are affected or treated exactly the same.
Let’s look at the most obvious fact first; MS presents differently in all patients. We don’t all present with the same symptoms before being diagnosed. Sure there are more common symptoms that present before a diagnosis like optic neuritis but even then some people might just have blurry vision where others might go color blind or have eye pain, in fact, some people might have any of these things in just one eye instead of both! As time goes on patient “A” might develop a set of symptoms that patient “B” does not and may never even experience! This means that some of the struggles one person with MS experiences may be different than what another person with MS experiences especially when you consider the fact that the different combinations of symptoms these two people each have may result in different daily struggles. Being dizzy sucks but being dizzy with nystagmus (rapid and involuntary eye movement) is going to be a little different. Adding any symptom to that set will change how it makes someone feel.
Now, what about treating MS? This is what I notice a lot of people have a hard time fully grasping and it is totally understandable. There are some people who use a disease modifying therapy like Copaxone and are relapse free for years where some people relapse left and right while on it. Maybe all patient “C” needs is a pill like Aubagio where patient “D” needs something like intravenous Tysabri to be relatively “stable”? At the same time, it can simply be a matter of tolerance. Some people have no issues with injectable medications like Rebif while others might have unbearable reactions/side effects to it. This is just the same for medications used to help manage symptoms. A lot of people take Neurontin (Gabapentin) for various symptoms where I just can’t handle it, it makes me feel like garbage! This even applies to common over the counter medications; I can stay wide awake for hours after taking Benadryl where I know people who feel terrible and can’t function afterward. Because we are all different, because everyone has different body chemistries, the way certain medications interact with us all is also different. Even while fully understanding this it can sometimes be hard to grasp though. Before doing Lemtrada I did a lot of reading about people who had responded very well to this treatment. I got my hopes up really high even though I knew my experience might not be the same. So far it has not been anything like the people whose journeys I am following so I have been rather disappointed… I know it’s still way early in my journey but my point is my Lemtrada experience is a perfect example of how a medication can affect us all differently.
What about diet? This is actually what made me think to write this article in the first place, because when you really think about it food interacts with all our bodies differently the same way medications do. Some people are gluten or lactose intolerant and some people are not. Now I am no expert on diet and don’t follow any strict diet myself so I can only use really basic examples as I am not preaching anything in particular, just that a diet that works for one person may not work for another or may even be detrimental to their health.
So, when it comes to eating healthy for people with MS, one common thing that people say should be avoided is saturated fat (I am mainly referring to the Swank diet here). So when I saw an article on how good coconut oil is for you I thought, “wait a minute, I see an issue here for people with MS” because there is about 12 grams of saturated fat in 1 tablespoon of coconut oil (a lot) and the Swank diet (which is based on the idea that saturated fat is one of the main causes of the body’s inflammatory response) only allows you to eat 15 grams of saturated fat a day. Look at all the foods you eat every day and check out their nutritional information; saturated fat is in everything so only eating 15 grams is not so easy! But OK, we are getting off track here. Coconut oil; it may be good for the general population but people who have MS are not part of that population (regarding health) are they? Coconut oil may actually be harmful to their health if it is such a high source of saturated fat. I’m not saying that is a fact or that I even subscribe to that idea, that is just according to that diet. What I am saying is a diet good for one person is not good for all people so it is something to keep in mind when reading about the newest and latest dietary advice. Think of it this way; orange juice might be a relatively healthy source of vitamin C for most people but to someone with diabetes? A large glass of sugar-rich OJ might be a very bad idea!
Do you celebrate your MS Anniversary?