Multiple Sclerosis is Widely Known and Poorly Understood
Why March is Important for MS Awareness
Why Awareness is Crucial For The Not-Yet-Diagnosed
It’s March, which means Multiple Sclerosis (MS) Awareness Month (In fact, it’s MS Awareness Week!). Multiple Sclerosis, the disease I’ve lived with for my entire adult life, is notorious for both its long list of potential symptoms and for the persistent myths about our condition. There is so much murky or secondhand information that MS really does need a month for awareness. The thing is, almost everyone knows a person within their orbit who has the disease. Like, oh, my friend has MS and she is doing great! Or, my uncle has it, and his health is declining. What ends up happening is that the general public only understands our disease insofar as they understand their person’s disease. People end up thinking MS is either a mild chronic condition that can be overcome with medication or a severely disabling illness with no cure. The fact is that MS is both of these conditions, and more! Because people think they have an understanding, they sometimes miss the signs to look out for. Studies have shown that the earlier in life a person has an MS diagnosis, the better longterm outcome of their disease course, so I’m offering a bit of awareness.
Demographic Myths
Studies have shown black women in the United States are 47% more likely to develop MS than white non-hispanic women like myself, and more likely than any other group studied. Up until 2015, the medical community widely accepted the myth that MS is more likely to occur in “Northern European”, or, white, populations. I’m starting here because this myth has persisted for so long that some doctors still believe MS to be a white illness, and ignore black women’s concerns. I hope that having this study handy to show medical professionals will help dispel this harmful myth.
So, what is Multiple Sclerosis, actually?
I’m so glad you asked. After all, I’ve had the disease for 21 years (I was 17 at diagnosis) and even I get confused! The first thing to know is that there are three types of Multiple Sclerosis. I started with the mild version, Relapsing-Remitting MS, eventually progressing to the more severe cognitive and physical impairments of Secondary Progressive MS. A third category, Primary progressive MS, means you never really see the mild version, and symptoms progress fast.
MS is a Chronic Illness , or a disease with no cure that patients live with for many years after diagnosis. While there are treatments for acute “flares,” neurologists generally advise their patients to get on disease modifying therapies (DMTs) early. Because MS has no cure, medications that prevent flares are incredibly important! MS is not necessarily fatal, however having the disease cuts life expectancy by about 7.5 years. Patients can die from complications of the illness (such as aspirating when throat muscles stop working).
MS is a Central Nervous System (CNS) Disorder. Multiple Sclerosis starts in the central nervous system, or brain and spinal cord, as opposed to the peripheral nervous system (nerves of the extremities), where conditions like ALS and Guillen Barré get their start. This means, in part, that the disease can exist in a person’s body for months to years before they ever experience symptoms.
MS is an Autoimmune Condition, a subcategory of chronic illnesses characterized by a malfunctioning immune system. Specifically, having MS means having an over-active immune system. It’s so overactive that the immune system sometimes mistakes perfectly healthy neuron circuitry for an invading virus, and swoops in to attack. The body’s own white blood cells and T cells go for the fatty coating around synapses known as the myelin sheath. Breakdown of myelin in the brain creates a white matter lesion, causing neurons to fire slowly, or not at all. When this happens, patients can experience physical symptoms known as flares. But what makes Multiple Sclerosis unique enough to be featured on several episodes of Dr. House is what happens next. With relapsing-remitting MS, scar tissue builds up around the lesion, and neurons go about their merry way, either circumventing the lesion, or making it through the scar tissue — and function is restored. Multiple Sclerosis roughly translated from latin means “Many Scars.”
MS is a Neurodegenerative Disorder, meaning that over time, the buildup of white matter lesions will compound, and the brain will slowly lose more function. Some people experience loss of cognitive function, others physical or motor function. Nearly all drugs currently on the market work to prevent flares from happening so frequently, thus keeping degeneration at bay.
MS often leads to Impairments. I think this is where most people get confused, and who could blame them? Impairments refer to the functional deficits that build up over time. Some of these impairments can be disabling. For example, my motor impairments are disabling in that I occasionally need a cane or rollator, but my sensory and cognitive impairments make it almost impossible for me to work 40 hours per week. I have what’s known as a dynamic disability, a term popularized by Medium writer and podcaster Brianne Benness, because I don’t need all of my supports all of the time. Many other chronic conditions lead to dynamic disability as well.
Okay, so what initial symptoms should I look out for?
Here are some common first symptoms according to The National MS Society (with their medical name in parentheses) that shouldn’t be ignored (especially if you experience more than one!) :
Extreme tiredness that does not get better with rest! (fatigue)
Vision changes or eye pain (optic neuritis)
Tingling or numbness in extremities (paresthesia)
Muscle weakness that occurs outside of tiredness (lassitude)
Tripping easily while walking (foot drop)
Balance problems
Muscle stiffness or spasms (spasticity)
Problems with memory and thinking (brain fog or cognitive fog)
Bladder or Bowel problems (incontinence or constipation)
As the title of this piece suggests, not every person with MS will experience every symptom, and certainly not with the same severity! Having lived with the disease for 21 years, I have experienced a wide variety of Multiple Sclerosis symptoms, some of them rare and severe. I hope that this article has made you more aware of the disease mechanism and possible signs to look out for when it comes to Multiple Sclerosis. In typical MS fashion, the writing and editing has taken me so long that I’m experiencing fatigue! So, for today, just a bit of awareness is enough. I discuss MS extensively in my work, and I invite you to check out my writing, podcast appearances, and instructive videos here.
Disclaimer: The information in this article is not medical advice, and I am certainly not a doctor. For complete information, please visit The National MS Society!
Erin Ryan Heyneman is a disabled parent, educator, creator, and Commissioner on her city’s Commission on Disability. Find the rest of her work here!