After watching the viral video of model, Sophia Culpo, claiming that she was "testing positive for Multiple Sclerosis"... I decided to write a post debunking some problematic perceptions people have when it comes to MS. Let's start with this one.
"I can take a test to see if I am positive or negative for MS" - Myth. To diagnose MS, doctors typically employ a process of elimination since there isn't a specific MS test available. Instead, a neurologist administers a series of tests to rule out alternative conditions. Once other possibilities are eliminated and specific test results emerge, the neurologist can then confirm an MS diagnosis. If you are having symptoms (common signs could be a tingling sensation in extremities, chest, legs, or back, doubled or blurred vision, drop foot, difficulties walking, weakness in arms or legs, eye twitches, and/or body tremors), see a neurologist. You will need to get an MRI, spinal tap, and bloodwork to test for a variety of diseases associated with these symptoms. Once they eliminate those possibilities, they will then diagnose you with MS.
"MS only affects white people" - Myth. For years in the medical community, there was (and still is) a harmful misconception that MS predominantly affects women with Northern European ancestry, ages 28-35. The ER ophthalmologist even asked me questions about my family lineage and told me that I fit the perfect demographic for an MS diagnosis. Let's break that down. Yes, MS is 2-3 times more common in women versus men. And while it is true that black and brown patients are diagnosed less, that does not mean they are less likely to have MS. That just means that their symptoms are historically not taken as seriously, making this misconception even more dangerous.
"If you have MS, then you should be in a wheelchair"- Myth. MS is often referred to as the "snowflake" disease - no, not because of our political affiliation lol - but because it affects each person uniquely. While some with MS will have a disability you can see, (ie. needing a wheelchair or cane) many live with "invisible" or cognitive struggles such as brain fog, anxiety, memory loss, body numbness, extreme fatigue, pain in the chest or ribs, double vision, etc. It is a good reminder that you do not need to see someone's struggles for them to be real.
"The Covid-19 vaccine leads to MS"- Myth. MS has been around long before COVID-19 and will continue to be around until we can find a cure. The most studied link to MS is Epstein-Barr (commonly known as Mono) in conjunction with Vitamin D deficiency. It is also worth noting that there are roughly two million people worldwide diagnosed with MS. About one million are in the United States. If the COVID-19 vaccine were linked to MS, a substantially greater number of people worldwide would likely be impacted. Furthermore, establishing such a connection would require extensive studies spanning many years, rendering it speculative at present.
"With MS, you cannot have children."-Myth. While you will need to consult with your Neurologist about how you plan to navigate treatment when you start to have a family, MS will not stop you from a healthy pregnancy. In fact, many women have claimed that their MS symptoms resolve or improve during pregnancy, especially in the third trimester. Keep in mind that your children will be at a slightly higher risk of developing MS. I don't believe this is a reason not to have children, but you should be aware. Hopefully, the cure is just around the corner :)
"MS is genetic"- Yes and No. According to The National MS Society, MS is not an inherited disease, "but people can inherit genetic risk. This means that MS is not genetic in the simpler way that black hair or dimples are. In fact, researchers have identified about 200 genes that each contribute a small amount to the overall risk of developing MS. Studies of twins have contributed to the belief that genes do play some role. In the general population, the risk of developing MS is about 1 in 334. In identical twins, if one twin has MS, the risk that the other twin will develop MS is about 1 in 4. The risk of developing MS also increases when other first-degree relatives (parents, siblings, and children) have MS, but far less than in identical twins.
Research is ongoing to better understand how genetic risk contributes to the development of MS."
Have other misconceptions that you'd like me to deep-dive? Send me a message and I will add them to my list.
Because the information on this blog is based on my personal experience, it should not be considered professional medical advice.