At Heritage Christian School of Hudsonville, Michigan, we have been privileged on one school day in each of the past two years to study various disabilities and conditions which affect many of God’s children. It is our hope that as the students move on in class levels from year to year, they will also continue to move on with their learning about various disabilities and illnesses. I have presented the disease Multiple Sclerosis to the 8th grade class for the past two years, concentrating not only on the process of the disease, but also on the emotional toll that MS and other serious illnesses can have on individuals and families. It is my hope that what I share about my experience and knowledge of MS will help the students in a small way as they mature emotionally as brothers and sisters in Christ. What follows is the Discovery Center of Heritage’s introduction and then my presentation in words, written in first person as if I were speaking here on paper:
Today we will be learning about serious illnesses or chronic conditions that can affect you or your family. It is difficult to deal with these conditions, especially if your friends don’t understand. Most kids are not intentionally being mean, they just don’t understand because of a lack of knowledge. They haven’t had the opportunity to learn about conditions that are very much part of everyday life for some people. These conditions are trials in the life of Christians. Some day God’s purpose for these trials will be made clear to us, but until then we must take comfort and joy in knowing that God is in control. Understanding the trials of our fellow Christians will help us serve Christ in the way of serving his children here on earth.
I will be explaining to you the disease Multiple Sclerosis, speaking first about the actual disease itself, including its symptoms, diagnosis process, and treatments. Then I will speak about my experience with the disease, both physically and mentally. Finally I will talk with you about how YOU can respond to someone with a serious illness and also to family members of someone who is struggling with a serious illness.
The most concise definition I can find for Multiple Sclerosis is as follows: MS is a chronic disease of the central nervous system, likely an auto immune disease. Breaking this definition down into pieces, it can be explained rather easily. The fact that it is a chronic disease means that there is (at this time) no cure for MS. Once people are diagnosed, they have the disease for the rest of their lives. MS is found in the central nervous system, which means it is in the brain, spinal cord, and optic nerves. The fact that MS is an auto immune disease means that a person’s own body is the actual attacker, seeing its central nervous system as a disease that needs to be gotten rid of.
In the central nervous system of a person who has MS, the nerves are affected. Nerves of a healthy person are covered with a fatty tissue called myelin. This myelin coats and protects the nerves like a blanket, allowing the electrical impulses sent from the central nervous system to a person’s body parts to travel freely and with lightning speed. But MS damages this coating, the myelin is eaten away, and the electrical impulses are interrupted and at times even disconnected completely. This damage to the myelin is called demyelination, a fancy word which describes the formation of scar tissue. Areas of scar tissue on the nerves of a person with MS are called lesions or plaques if the body is unable to “heal” the damage that has occurred. The scars formed are the source of the word sclerosis, which originates from a Latin term meaning scars. Persons suffering from MS will have many such scars in their central nervous system, and will at times go through periods (called relapses, flares or exacerbations) where they develop new lesions. They will also suffer from false flares (times when it seems a relapse is occurring, but it is actually a false alarm).
Research is being done on MS continually. Researchers have been able to define four different kinds of MS. The first kind, Relapsing Remitting MS, is the most common type. At any given time 55% of people who have MS have RRMS. A person suffering with RRMS has definite relapses, but then also periods of remission where their symptoms go away mostly or even completely. Secondary Progressive MS is the 2nd variety, affecting 30% of those who have MS at any given time. This type of MS is a progression from RRMS, characterized by the end of the remission periods that a person with RRMS had previously had and by the steady worsening of symptoms. At any given time, 10% of MS sufferers have Primary Progressive MS, a type of the disease where the person from diagnosis time on progresses steadily, and there are no relapses. The least common category of MS is Progressive Relapsing MS, suffered by 5% of those diagnosed at any given time. This type of MS is the most serious; the disease progresses steadily, and in addition to that, there is the development of many relapses and new symptoms.
Millions of dollars are spent researching MS and other serious diseases, yet numerous questions remain. One such area of MS research that still has unanswered questions is the cause of the disease. Research has narrowed down the cause of MS to an interaction of four factors: infectious diseases, the immune system, genetics, and the environment. All of these work together in some way, creating a “perfect storm” for a person to develop MS. Some viruses in the human body “look” like a nerve cell. The immune system develops T-cells to fight this initial infection. Those T-cells, by the amazing design of God, stay in a person’s body in order to fight off the virus, should it return. However, for some reason, they later “see” a nerve cell, and so fight what they mistake to be a virus. This is where a person’s immune system becomes a factor, attacking the outer sheath of the nerves, the myelin. Then besides this, the genetic factor comes into play—everyone has a “chance” of developing MS, and there are many different statistics regarding genetics. One such collection of data suggests that for an average person, there is a one in one-thousand chance of developing MS. If, however, a parent or sibling has MS, that chance becomes one in one-hundred. The last factor in the cause of this disease is environmental. The farther south or north of the equator a person lives, the greater their risk of developing MS. Deficiencies of Vitamin D, produced by exposure to sunlight, are startlingly common in MS sufferers, and therefore may be involved in MS. All four of these factors work together, and studies of those who have MS are always being done to determine more about how this actually happens.
The symptoms of MS are extremely vague and can easily be explained away by any number of things, making the diagnosis process exceptionally frustrating. Symptoms come and go, especially in the early stages of the disease. Some common symptoms are fatigue, depression, numbness, tingling, pain, dizziness, vision problems, heaviness in arms or legs – all things that occur to any given person at any given time. To further complicate diagnosis, the number of different symptoms from which a person with MS can suffer is greater than fifty, and most are invisible symptoms (often even thought to be a figment of a person’s imagination). In order to be diagnosed then, a person first has to find a doctor who will listen to him or her, given the vague symptoms that come and go randomly. This doctor, a neurologist, will do many exams and blood work and then will order an MRI to look for areas in the nervous system that are trying to heal. If these test results look suspicious for MS, a spinal tap will be ordered which looks for oligoclonal bands (antibodies in the fluid) and protein in the spinal fluid (a by-product of destroyed myelin). Finally a vision test called Visual Evoked Potential Testing is done to measure the brain’s response to changing images, in effect determining if there is optic nerve involvement.
Treatment for a person diagnosed with MS varies. Immediately in a flare, the person will often have three to five days of intravenous steroids administered to calm the inflamed nerves, hopefully stopping any damage that is occurring. A newly diagnosed person must choose from several medications called Disease Modifying Drugs (DMDs) to reduce the frequency of new lesions. Those diagnosed are encouraged to begin strength training and aerobic training to prevent muscle spasticity and osteoporosis (a side effect of the steroids). All people with MS are encouraged to take many vitamin supplements, especially vitamins D and B12. Life style changes are urged, changes such as avoiding extreme heat, tiredness, stress, and busyness as all these things often make MS symptoms worse.
We have a cute, old couple that lives next door to us. When I told them I had MS, the wife nearly collapsed. She instantly envisioned me in a wheel chair shortly and drooling soon after that (exaggerated imagination, but valid in her mind!). Thankfully, the prognosis for a person diagnosed with MS is no longer as grim as it was fifteen or more years ago. DMDs have greatly improved the statistics, have slowed the progression of the disease and have reduced relapses dramatically. Except in severe cases of MS, there is little effect anymore on a person’s life span. All this has been made possible by the research that has been and continues to be done for MS.
This is MS in a nut shell, drastically simplified. I have only scratched the surface of the vast amount of information on this disease. (To be continued.)