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Shades of Gray: MS Misconceptions, Misunderstandings, and Misinterpretations

By: Julie Stachowiak, Ph.D

MS is a strange disease. Most people get diagnosed fairly young, go through periods of intense emotion and information gathering, and then kind of “settle in” to living with MS. Besides occasional scary moments during relapses, or some crossroads that we may come to in terms of disability or symptom progression, there aren’t really many panicky times of medical intervention or the types of life-or-death decisions faced by people with other health problems. We don’t get cured, but we don’t die, either. We go on living with our MS, sometimes feeling better and sometimes feeling worse.

What this means is that we end up with a lot of time to ponder things. We wonder about what we can do to feel better and what we might have done to get ourselves into this situation in the first place. When we start to investigate some of these thoughts, we find  many other people have wondered about these same things. Why did we get MS? What can we do to make living with it easier? This line of questioning quickly becomes problematic. For every question or idea you might have about MS, there are countless different opinions out there – many presented as fact.

As the expert on MS at About.com, I hear a lot of the common questions people have about the disease. I’ve found that despite all the research out there and all the people that are convinced of one position or another, the answer to most controversial beliefs about MS is probably somewhere in the middle.

Case One: The MS Diet

On one side of this debate are people who say they “cured” their MS by following a certain diet (be it low-fat, dairy-free, high-fiber, strictly vegan, or something else entirely). On the other side are the doctors and scientists who say there is no scientific evidence that diet has any impact on MS, therefore changing your eating habits is a worthless approach.

In my opinion, both of these positions are extreme. I do not think that diet can cure MS. However, I do think that many people with MS (and people in general) are sensitive to certain foods. In my case, it’s legumes, especially peanuts. After I eat something that contains peanuts, I feel terrible – I am fatigued, my feet tingle worse than ever, I can’t think clearly and I get headaches. In other words, it feels as if my MS gets worse. However, as bad as I feel when I eat peanuts, I don’t believe they impact the progression of my MS.

Those who say there is no scientific evidence to show changes in diet benefit MS are referring to a lack of rigorous long-term clinical trials, research that is not only very expensive but also almost impossible to implement in a meaningful way around something like dietary habits. A case in point is a study of the most famous diet for MS, The Swank Diet, a low saturated fat approach developed by Dr. Roy L. Swank. After Swank followed 144 patients over a 44-year period, he found those who followed his diet had no significant clinical progression of their MS. However, when the results of the trial appeared in The Lancet, a prominent medical journal, in 1990, many experts rejected the findings, saying that the study had been poorly designed.

Case Two: CRAB-by Math

We often hear that the CRAB (Copaxone, Rebif, Avonex, Betaseron) disease-modifying drugs are supposed to be about 30 percent effective in preventing relapses. Hearing that, some people think if they normally have three relapses annually, after a year on the medicine, they should have only two. That is not really how the math works. It is very difficult to try and apply statistics from clinical trials to individual people in a meaningful way. The way drug companies arrive at that percentage is by comparing how many relapses one group of people in a study have while taking one of the drugs, compared to how many relapses a different group has while taking a placebo. 

For example, let’s say we have a group of 1,000 people with MS taking Drug X. In the course of one year, those people have a total of 1,000 relapses. In contrast, a different group of 1,000 people, who aren’t on any MS therapy, have a total of 1,300 relapses. That doesn’t mean that each person in the treatment group had one relapse or that each person in the placebo group had 1.3 relapses (which is not really possible anyway). In both groups, there may have been some people who had many relapses and some who had none, but the overall number of relapses is lower by 30 percent in the group that was treated with Drug X.

Even if that weren’t the case, many other factors determine how an individual person  responds to a particular therapy.  Side effects, habits, and feelings about self-injection can also impact how well you adhere to a drug. The bottom line is that you really won’t know how you will respond to a disease-modifying drug until you try it.

Case Three: The Lone Neurologist

Last year, when I asked my neurologist if he could give me some antibiotics, he replied, “No, you have to see a real doctor for that.” As a person with MS, I know I tend to focus on my MS symptoms when I think about my health. However, all it takes is a nasty respiratory infection to remind me that I have the same health vulnerabilities as anyone else. The same applies to everyone else with MS. All of us need to have a primary care physician. Women need a gynecologist to take care of non-neurological problems as well as perform checkups and screenings to ensure that we are staying healthy. Of course, for most of us there will also be things that arise that require specialty care or monitoring, such as pregnancies or a heart condition.

It is important to remember that just because your neurologist can treat something, another medical professional  may be a better choice. Depression, for example, while a common symptom of MS, is best treated by a psychiatrist, preferably one with experience treating people with MS. It is very important that you keep all of your doctors “in the loop” about your care and treatment decisions, and it is best to check with your neurologist before taking any new medications.

Case Four: Looking for a Cause

Sometimes when people are convinced of something, especially to do with their health, beliefs become based more in emotions, like regret or anger, than grounded in fact.

I’m not going to argue whether something does or does not cause MS. I don’t know for sure, and neither does anyone else. However, I can state pretty boldly that there is not one single thing that directly causes the disease. More likely, it is a combination of things that causes MS – genetic vulnerability, combined with some factor that makes our bodies inefficient at metabolizing vitamin D, combined with an infection that gets our immune system “riled up” in the wrong way, combined with…well, you get the picture.

The bottom line is that our bodies are amazing in their complexity. They are so complicated, with all the hormones and chemicals and genetic factors and immune functioning, that it is actually pretty astounding that more things don’t go wrong in more people. For those of us with MS, something got “tweaked” in a way that sent our immune system to attack our myelin, mistaking that component of our central nervous system for a foreign invader. What caused or contributed to this chain of events is difficult to pin down.

What is important, however, is that we take care of ourselves. Wherever possible, try to eliminate the things that you know cause harm to your health or your well-being, whether they be bad habits, unfulfilling relationships or negative thought patterns. Follow your gut. If you are convinced that something caused your MS or is making it worse, stop doing it. If you are unsure that you are on the right treatment path, do more research and ask questions until you feel comfortable with your decisions.

Julie Stachowiak, Ph.D. is the About.com expert on MS. An epidemiologist diagnosed with MS in 2003, she holds a Ph.D. in Public Health from Johns Hopkins University, as well as master degrees from Columbia University in both Public Health and International Affairs. Visit her at www.ms.about.com.

(Last reviewed 7/2009)



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