The month of March is often associated with St. Patrick’s Day, the first tendrils of spring, Daylight Savings Time, and March Madness for collegiate basketball. March is also Multiple Sclerosis Awareness Month and I’m here to talk about this invisible illness which affects 2.3 million people worldwide. My name is Kacee Cole and I was diagnosed with MS on Christmas Day 2013, just a hair over a month after my 27th birthday. I will begin with general information about the illness, some myths and facts, and finally wrap up with my personal story with this complicated, difficult disease.
Experts recognize four courses of Multiple Sclerosis: progressive-relapsing, secondary-progressive, primary-progressive, and relapsing-remitting. I personally have the last one which is the most common form of the illness with 85% of patients being diagnosed. Roughly 5% of patients are diagnosed with progressive-relapsing, 10% with primary-progressive, and 50% of those diagnosed with relapsing-remitting will develop secondary-progressive within 10 years of their initial diagnosis. Below is a breakdown of each type:
- Relapsing-Remitting: this is the most common disease course and is characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks – also called exacerbations, relapses, or flares – are followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may disappear or some may continue and become permanent. Fortunately, there is no apparent progression of the disease during remission periods. At different times, RRMS can be further characterized as either active (meaning relapses and/or evidence of new activity on an MRI) or not active, as well as worsening (defined as an increase in disability over a certain period of time following a relapse) or not worsening.
- Primary-Progressive: this is characterized by worsening neurologic function (accumulation of disability) from the onset of symptoms without early relapses or remissions. PPMS can be further characterized at different points in time as either active or not active, as well as with progression or without progression.
- Secondary-Progressive: this form follows an initial relapsing-remitting course and most people diagnosed with RRMS will eventually transition to a secondary-progressive course in which there is a progressive worsening of neurologic function over time. SPMS can additionally be described at different points in time as active or not active as well as with progression or without progression.
- Progressive-Relapsing: PRMS refers to a pattern of relapses within primary-progressive MS. About five percent of MS patients have the progressive-relapsing form of the disease. PRMS is the least prevalent form of MS, however it’s still important to know the facts about this disease, especially if you have PPMS. This type of MS is known for worsening symptoms that progress over time.
What exactly is Multiple Sclerosis? It’s a progressive neurological condition with no known cure in which a person’s immune system attacks the central nervous system, causing inflammation that damages myelin – the fatty coating that insulates and protects nerve fibers. Think of your nerve fibers as electrical wires and the myelin the plastic coating surrounding and protecting those wires. With MS, the immune system attacks and strips away that protecting coating, leaving the nerve fibers exposed. Just as an exposed electrical wire can spark and wreak havoc in a home, those exposed nerve fibers wreak havoc in the body and how it behaves. Much research and effort has gone into finding out what causes Multiple Sclerosis yet there are still no clear answers.
MS is an unpredictable disease that acts differently person to person. The irregularity of symptoms alone makes MS a frightening disease and having a strong support system of friends, family, and medical professionals combined with appropriate treatment can aid in coping and minimizing relapses.
MS is labeled as a “silent disease” or “invisible illness” because many people with Multiple Sclerosis look no different than a healthy person from the outside due to the fact that many MS symptoms cannot be seen (blurred vision, chronic pain, and sensory problems to name a few). Someone with MS may need accommodations despite having no mobility issues. It’s also labeled a silent disease because even during periods of remission, the illness continues to progress. Multiple Sclerosis is progressive and the goal in treating it is to slow the progression as much as possible. To stave off the inevitable decline.
How do you know if you’re having a relapse? When new symptoms crop up or existing symptoms worsen for at least 24 hours with at least 30 days since the last incident, you are having a relapse. During a relapse, immune cells that ordinarily circulate harmlessly through the blood stream attack and break down the myelin around nerve cells. There is no cure for relapses, but high doses of intravenous and/or oral steroids (Prednisone, Solu-Medrol, etc.) can help speed up recovery time by suppressing the immune system currently in attack mode.
So who gets MS? It affects so many millions of people, but is there a group more likely to be affected than others? Well, MS is more common in women than in men and there is a greater prevalence of MS in higher northern and southern latitudes. A person will most likely be diagnosed between the ages of 20 and 50 years old, but of the approximately 400,000 people living with MS in the United States, about 8,000-10,000 are children or adolescents. While doctors don’t know why the body attacks the myelin, they do believe there are some factors which increase the risk of MS developing. These include a family history of MS (while the genes you’re born with may increase your risk for MS, there is no hard evidence that the condition is passed directly down through families), other autoimmune diseases, certain infections (usually viral), being Caucasian (particularly with Northern European descent), or living in temperate climates. Most likely, MS is caused by a combination of genetic factors and environmental factors. The good news is, the lifespan of a person with Multiple Sclerosis is just about as long as the lifespan of a person without the disease.
Diagnosing Multiple Sclerosis is often very difficult as many of the symptoms overlap with those of other diseases and conditions. This means it can often take a lot of time and a lot of tests for doctors to get the diagnosis and other conditions usually have to be tested for and ruled out to aide in a correct diagnosis. A doctor will review the patient’s medical history and do a physical exam before recommending one or more of the following tests: blood work, lumbar puncture (also known as a spinal tap), and an MRI. In achieving an MS diagnosis, the MRI is an extremely important tool and is also vital to monitoring the progression of the disease.
MRI scans reveal abnormalities (such as lesions) in the majority (90-95%) of MS patients. Radiologists and neurologists use the MRI scans to search for evidence of new damage, primary lesions, and evidence of chronic damage to the Central Nervous System. The other generally necessary tool in confirming an MS diagnosis is the lumbar puncture. Unfortunately this is made difficult in that an LP is only an effective tool if the patient is currently in the midst of a relapse. The reason an active relapse is necessary is the LP is done specifically to see if the spinal fluid contains bits of myelin floating around; this will confirm MS as the myelin can only be found in CSF if one is in an active MS relapse.
Now you know you have MS – what next? What symptoms are to be expected? Because MS causes communication issues between the brain and body, symptoms can range from inconvenient and irritating to debilitating and sometimes fatal. There is no short and sweet answer for exactly what to expect as this disease has a wide array of possible symptoms and because MS is unique to each individual patient, it is possible to have 20 patients in a room and nobody have a single matching symptom.
The most common (and potentially disabling) symptom is fatigue and affects between 75-90% of patients. Few people understand the magnitude of Multiple Sclerosis fatigue – it is akin to being up for 3 days then running a marathon while juggling newborn kittens and wearing rollerskates. Once you have that lovely visual, realize that you are still not even close to how a person suffering from MS fatigue feels. It drains everything out of you to the point that even listening to someone talk is too exhausting, but sleeping or napping does nothing to improve the feeling.
Some symptoms may not be noticeable in the early stages of the disease while others may cause a severe impact on a person’s quality of life. If untreated, MS symptoms will almost certainly get worse over time. Some very common symptoms are bladder and bowel problems, trouble walking and/or balancing, sexual dysfunction, stiffness, numbness and tingling (which is caused by damage to nerves that transmit sensations from body surfaces to the brain), muscle weakness, muscle spasticity, tremor, speech difficulties, swallowing difficulties, memory problems, vision issues, depression, and anxiety. People with MS may experience a variety of emotional problems like mood swings, stress, pseudobulbar affect (this is when a person spontaneously bursts into crying or laughing that is involuntary and uncontrollable), anxiety, and up to 50% of patients will develop significant depression over the course of their lifetime.
Another common, yet less understood symptom of Multiple Sclerosis is pain and said pain exists in many different forms including, but not limited to: sharp pain, throbbing pain, static or electric shock feeling pain, and pins and needles. Paralysis is one of the most severe symptoms but only affects about 1/3 of patients. Most people with MS are able to maintain mobility, although some may need assistive devices like canes or walkers.
When it comes to relapses, doctors are not completely certain why a relapse happens when it does, but there do seem to be some triggers that almost always cause a relapse. A very common trigger is heat – a large percentage of MS patients have heat intolerance and in general patients are strongly encouraged to stay cool as much as possible. Hot weather, sun exposure, exercising in a hot and/or humid environment, and fevers/illness can all cause a worsening in symptoms, however it is not associated with additional progression of the disease. Patients are advised to use fans and air conditioning when possible, drink cool drinks and use cold/icy compresses to stay cool. Often, once a person has cooled down, their symptoms will back off within a couple hours, but it can take up to a few days to fully return to their “resting” behavior.
Another known trigger is stress – physical or emotional. When one’s emotions are heightened, especially negative emotions, symptoms can increase as they do with heat intolerance. The difference is stress can cause a full relapse, not a temporary worsening of symptoms (known as a pseudoflare or pseudoexacerbation) and may require steroid treatment to return back to a remission status.
All this information can be extremely overwhelming for someone newly diagnosed, especially if they have little to no knowledge of what Multiple Sclerosis is prior to their diagnosis. There are many more treatment options now than years ago when my father was diagnosed. All medications used to treat MS are called DMTs or Disease Modifying Treatments and have been shown to be very effective in decreasing the frequency of relapses, though just like any other medication, each patient reacts differently to each treatment.
There are three categories of DMTs: oral, injectable, and intravenous. Some oral options are Gilenya and Tecfidera, injectables include Copaxone, Betaseron, and Rebif and the intravenous choices include Tysabri and Novantrone. While DMTs of any variety are effective in most cases of MS, they have not been proven to be effective in cases of Primary-Progressive Multiple Sclerosis. Dosages vary, but in general, oral medications are taken once a day, injectables either once a daily or once every few days, and the intravenous options are typically infused on either a monthly basis or every few months. Doctors have also found a link between low vitamin D levels and Multiple Sclerosis, so many MS patients are advised to take vitamin D supplements based on their levels in regular blood work. The vitamin can act as a protector against MS, possibly leading to fewer relapses in people who maintain normal vitamin D levels in their bodies.
Despite the prevalence of this disease across the world, there are many myths that circulate regarding several aspects of the condition. I have five myths below with the factual information included after each one.
Myth #1: Multiple Sclerosis is a terminal illness.
Fact: The medical definition of a terminal illness is one that results in death within a fairly short time and which has zero possibility of recovery. For someone with a terminal illness, death is expected within weeks or months, though sometimes longer. Multiple Sclerosis is a progressive, life-long disease, but not a terminal one. Most people are diagnosed in their 20s or 30s and will, on average, live with the disease 40-50 years. Typically, people with MS live until their mid-70s (barring other illnesses that may occur or unrelated health complications), a reduction in life expectancy of 6-7 years as compared with the general population. With the advent of new and better DMTs for people with RRMS, the average life expectancy may begin to climb as the DMTs reduce the number of relapses in conjunction with the associated increase in disability.
Myth #2: Once diagnosed, you have to give up working.
Fact: MS is different for everyone – each individual will experience different symptoms at different times and with a different impact those symptoms have on one’s ability to work. Other factors, such as the type of work being done also play into a patient’s ability to continue working. It is common for family, friends, and sometimes even healthcare professionals to advise a person recently diagnosed with MS to stop working. This reasoning could be a misunderstanding of the nature of the disease or because they feel the person is better off without the added stress a work environment can cause. Many MS patients never experience symptoms severe enough to force them to stop working before they’re ready and oftentimes people who make big changes to or leave the workforce immediately after their diagnosis or after their first major relapse regret doing so.
Myth #3: You will end up in a wheelchair.
Fact: For the vast majority of MS patients, this will not be the case. Getting rapidly worse is rare and most people will never need to use a wheelchair on a constant or even regular basis.
Myth #4: You will have to reduce your physical activity.
Fact: Moderate exercise is recognized as an important element to maintaining general good health and wellbeing for all people, even those with Multiple Sclerosis. Some patients may face barriers, for example some of the symptoms associated with the disease may make exercising difficult or require a modified approach to achieve success. There are exercises which can be done sitting or lying down which often work for patients struggling with more conventional exercise plans.
Myth #5: You shouldn’t have children if you have Multiple Sclerosis.
Fact: A person with MS is less likely to have a relapse during their pregnancy, although the risk of a relapse does increase during the first six months postpartum. Pregnancy has no long-term effect on the course of MS and a person with MS is no more likely to experience complications of any variety than a person who does not have MS. While family members do have a slightly increased risk of developing MS, it is small and not a disease that has been proven to be genetically inherited like some other conditions.
I suppose now is the time to tell my story, one that begins on Christmas Eve 2013. I had been watching television in our living room, snuggled up and just relaxing, when I got the most piercing migraine I’ve ever had. Suddenly I was in intense pain, my eyes blurring and watering. I’ve suffered from migraines since I was a teenager, though they’ve lessened in frequency as I’ve gotten older. I decided to head to bed and sleep it off, my usual tactic for dealing with the really bad ones. I woke up at about 4AM to use the bathroom, but immediately knew something was wrong when I got up from the bed and immediately fell down. As I groped in the dark for my dresser to help hoist myself from the floor, I realized I was suffering from some extraordinarily severe vertigo. I couldn’t figure out exactly what was happening until I made it to my bathroom and switched on the light and realized not only was I dizzier than I had ever been (even after heavy drinking at a party), but I was unable to focus my eyes. I couldn’t tell, but my wife could, that my eyes were moving involuntarily – a condition I learned is called nystagmus.
We have a car, but my wife doesn’t drive and I certainly couldn’t drive being unable to focus my eyes, so I called 911 and requested a non-emergency ambulance (meaning no flashing lights or sirens) to take me to the ER. Once I arrived and was transferred to a bed, a doctor came to give me a brief exam (including an eye exam) before pronouncing me discharged with instructions to see an ophthalmologist to deal with the nystagmus. I knew whatever was happening to me was not related to my eyes, so I refused to leave and instead told the attending physician I wanted a neurology consult. He rolled his eyes, but called up to the neurology department only to be told to give me an MRI immediately. I was wheeled off blind, confused, and alone as my wife couldn’t accompany me at this point.
When the MRI was completed I was taken back to the ER and a short time later told I was going to be admitted and then given additional tests. They brought me upstairs and gave me a room before informing me I would be having blood drawn and then a lumbar puncture done. I had never had an LP, but knew what it was and roughly what to expect. I was still unprepared – the shot to numb me sent liquid fire racing up my spine before a needle was inserted and the table tilted. My cerebrospinal fluid was uncooperative and didn’t want to drain, so they had to tilt the table so vertically that I was gripping the top as tightly as I could, certain I was about to slide right off and into a heap on the floor.
Fifteen agonizing minutes later I was returned to my room, still unable to focus and thus unable to see. My wife was waiting for me and helped me dial my boss to inform her of my current state of affairs. Unfortunately, because she doesn’t drive and we have pets that needed tending to, my wife had to leave and I was alone. Keeping my eyes open gave me headaches, so I opted to keep them closed almost all the time, speaking to people I never really saw. It was the most isolating, lonely experience I’ve had as an adult because the uncontrollable nystagmus prevented me from sending text messages or even making phone calls. The fact that I was unprepared for any type of hospital stay meant I didn’t have my phone charger, yet another barrier to being able to communicate with anyone I cared about.
The next morning I received a visit from the staff neurologist who sat on the edge of my bed to tell me he knew what was wrong with me; he calmly told me all the tests confirmed a condition called Multiple Sclerosis. I then blew his mind when I in turn calmly told him that I was familiar with the disease as my father had it (he passed away in 2007 from heart failure unrelated to his MS) and my half-sister (my father’s daughter from his first marriage) has MS. I told him I knew what it was and I was just relieved it wasn’t a brain tumor or stroke (the two fears that had been plaguing me since the ambulance picked me up). He let me know they’d begin intravenous high dose steroids, getting me a referral to the University of Florida’s neurology department, and providing me with a prescription for a medication I was to take daily via injection. Shortly after, a social worker from the hospital came to speak to me and she let me know my insurance might cover at home care for the remainder of time I needed the IV steroids. Lucky for me my insurance plan DOES cover that option and I was able to be released from the hospital on my third day. The remaining two days I needed the IV treatment, a nurse came to my home and administered everything. The medication was sent to my home same day via courier.
This began Hell Year. 2014 was nothing but back to back relapses and a rapid worsening of my condition. The medication prescribed wasn’t working and my new neurologist was trying to find something that would. I was out of work for over a month after I was released from the hospital and I spent most of that month taking IV and then oral steroids. I would wean off the steroids only to be hit again with worsening symptoms in a matter of days. What began as vertigo and nystagmus quickly morphed into muscle spasms, muscle weakness, partial paralysis of my throat, jaw, and tongue, neuropathy in roughly 80% of my body, and chronic pain. I lost feeling in my hands and arms and had to re-teach myself how to write, type, and do basic tasks with my hands. To this day I only have partial feeling in my hands, neuropathy which will never go away.
A year and a half after my diagnosis I was on my second DMT and woke up one Saturday with no feeling below the waist. My wife had to carry me to the toilet, to the bathtub, had to bathe me. We had purchased a cane several months prior, but it wasn’t enough with no feeling in my lower body, so we bought a walker. It took five days of IV steroids and over five weeks of oral Prednisone before I arrived at my new normal, which is severe neuropathy in the left side of my body, especially my left leg and foot, and partial numbness in my feet and legs. I had to re-learn how to walk and still have to drive barefoot as I cannot safely feel the pedals if I have shoes on.
I live with chronic pain – every moment of my life is pain of one degree or another. I am currently able to work full-time, but that is due in part to my ability to work from home if necessary and the flexibility my manager allows me such as leaving early on days I’m not feeling well or letting me have days off no questions asked because I just need a rest. I also have a handicapped parking placard hanging in my car because walking for long distances not only exhausts me, but it causes muscle spasms in my back and legs which increases my pain dramatically; I’ve even had spasms in my back so severe they dislocated a rib. However, I didn’t realize that’s what happened – I thought I just had a very painful muscle knot in my side. It wasn’t until I asked my wife (who at this point is my full-time caregiver, doing things like cleaning the house, grocery shopping, cooking, and doing the lion’s share of caring for our pets because I no longer am able to do so) to massage my back and then felt the rib pop back into place (resulting in literally instant relief) did I realize what happened. I had spent an entire week with a dislocated rib, working every day and just assuming I had a very bad muscle knot that needed to be worked out.
There is good news, however. I now have a wheelchair so I can go on more outings (being limited to either home or work has been detrimental to my quality of life) both in my neighborhood (which has wonderful walking trails, beautiful foliage and wildlife, and a gorgeous lake) and to things like the mall, museums, or coming up here soon, Tampa Pride. I also have been on the same medication for over a year now with positive results – not only have I had zero relapses in over a year, but my most recent MRI shows no active lesions and no new lesions which means as of right now, my MS is stable. This is the best possible thing to expect while dealing with this disease and I hope my remission lasts a very long time.
I wanted to make March all about MS in my small world – making daily posts with facts about Multiple Sclerosis in an attempt to educate people who may not know much, if anything, about it. Facebook is how I’ve been sharing information and when I was offered the opportunity to create a post for Ania and Alyssa’s blog, I had to take advantage. For such a common disease, most people know nothing about it, to the point where people find out I have it, tell me their relative or friend or neighbor has it, and then proceed to ask me about it because despite knowing someone dealing with MS, they don’t actually know anything about MS. It can be scary, it can be isolating, but it isn’t the end. Multiple Sclerosis is not a death sentence and you can live a fantastic life with it. I know I am.