It has been said that if you interview 1000 people with Multiple Sclerosis, you will get 1000 different stories. It’s true. I spent a couple of hours watching Youtube videos of individuals describing the course of their experience with MS. The stories were widely varied. The reactions to diagnosis ran the gamut from despair to determination.
In the early eighties, my diagnosis took almost three and a half years. I went through that range of emotions myself. Today there is much greater awareness of Multiple Sclerosis due to education projects of MS organizations, the accessibility of the internet, and the efforts of well-known celebrities who have personally experienced Multiple Sclerosis. Montel Williams, Teri Garr, Neil Cavuto, Ann Romney, Alan Osmond, and Annette Funicello are a few who have been diagnosed.
There are now dozens of websites, videos, organizations, books, research papers, and treatment options. The go-to sites for information for MS are:
National Multiple Sclerosis Society http://www.nationalmssociety.org/index.aspx
Multiple Sclerosis Association of America http://www.mymsaa.org/
Here is the standard description of MS :
MS is a disease that involves an immune system attack against the central nervous system (brain, spinal cord, and optic nerves). The disease is thought to be triggered in a genetically susceptible individual by a combination of one or more environmental factors. Although MS is thought by some scientists to be an auto-immune disease, others disagree strongly because the specific target of the immune attack in MS has not yet been identified. For this reason, MS is referred to as an immune-mediated disease.
As part of the immune attack on the central nervous system, myelin (the fatty substance that surrounds and protects the nerve fibers in the central nervous system) is damaged, as well as the nerve fibers themselves. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.
I think a far easier explanation is given in the following graphic from the Mayo Clinic:
In Multiple Sclerosis, the protective coating on nerve fibers (myelin) is damaged and may eventually be destroyed. Depending on where the nerve damage occurs, MS can affect vision, sensation, coordination, movement, and bladder and bowel control.
The quirkiness of MS is its unpredictability. There are as many symptom possibilities, theoretically, as there are nerves in the brain and spinal cord. But that’s not all. The progress of the disease can be equally unpredictable.
The MS Society describes four courses of MS – each of which might be mild, moderate, or severe:
- Relapsing-Remitting MS People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting M
Primary-Progressive MS This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. Approximately 10% of people are diagnosed with primary-progressive MS
Secondary-Progressive MS Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition
Progressive-Relapsing MS In this relatively rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.
Since no two people have exactly the same experience of MS, the disease course may look very different from one person to another. And, it may not always be clear to the physician—at least right away—which course a person is experiencing.
So, that’s why I describe MS as quirky.
My own course of MS has been relatively benign. Except for brief periods of time, I have not needed to be in a wheelchair. I have had few hospital stays due to MS. For about fifteen years or so, I had Relapsing-Remitting MS with many relapses (attacks) and recoveries. I have described some of the various symptoms in previous posts. Following a relapse I would usually go into a period of remission, when I had almost full recovery.
For the last few years I have been in what is called a Secondary-Progressive MS phase. I have chronic symptoms that are what I call “my normal”. I still have relapses, but never fully recover my previous levels of function. Some symptoms are merely inconvenient, but some are quite humbling. Here are some of my symptoms and adaptations:
- Deep fatigue is a constant in my life. Sleep rarely restores my energy. I awaken frequently during the night because of muscle spasms and bladder control issues. Most days I also need a nap in the afternoon. I always sleep on my La-Z-Boy recliner. Sleeping on a flat mattress gives me headaches,backaches, and muscle spasms. My recliner has a power controller that adjusts the footrest, back, lumbar, and headrest separately. This allows me to adjust my sleeping position during the night. I have learned to keep my iPad handy; I may as well be productive during those wakeful hours.
- Because I have very limited energy, I must measure my tasks in terms of energy cost. I keep a daily written list of tasks, and try to organize them in a realistic schedule. My schedule can be interrupted at any moment by overwhelming fatigue. I understand the analogy of “spoons”. I am definitely a “spoonie”. If you don’t know the term, read the story here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
- My balance is shaky. I can walk unassisted in my home, because I can rely on walls and furniture to stabilize my balance. I use a walker mainly for transporting items from room to room. The seat makes a handy place to carry necessary items from bedroom to office. I never leave home without my forearm crutch. Distances of about twenty feet unassisted will cause me to drag my left leg. Even with my crutch, I will start dragging after about fifteen minutes. I use an electric cart if available. I no longer shop in malls, but in small stores where I can park close by. I always use handicap parking. (Note: I try not to park in a handicap van spot, because people with wheelchairs need them.)
- I live with chronic neuropathic pain in both legs and feet. It feels like a bad sunburn with fire ants crawling on my skin. I am used to it. Most of the time I can ignore it. I don’t notice it as much when I am moving. It is worse when I try to sleep. Because of the neuropathy, I cannot wear an enclosed shoe. I wear open-back Clarks. I prefer socks designed for diabetics, because they are soft and do not have tight cuffs. I have eliminated all aspartame and artificial sweeteners from my diet, because there are studies that have shown them to cause neurogenic symptoms. About a year ago I started taking Low-Dose Naltrexone, which has helped significantly with the neuropathy. (I will talk about LDN in another blog post.)
- My eyesight has been drastically affected by MS. I have had several bouts of optic neuritis, which is common in MS. I need intense task lighting to read and work at my desk. I had cataract surgery in both eyes in 2012, so my vision was improved for a while, but I needed further laser treatment in both eyes. Due to MS, I have lost some vision in the lower right quadrant of my right eye. This means that when driving, I must turn my head to make sure no one is in my blind spot. It also means that night driving is difficult. Later this week I will have another laser treatment in my left eye because the retina is not getting enough light.
- I am also developing Macular Degeneration in both eyes. I realize that I will eventually lose my central vision. Of all my challenges, this is the one that is the most difficult to accept. I love to read, to study, and to write. I must continually pray for faith to trust God’s plan for my vision. My iPad has been an invaluable aid, because I can control the font size as well as brightness on the screen. I take it with me to church and small-group meetings so I can read my Bible easily, as well as take notes.
- In common with many people with MS, bladder control is a problem that impacts my life day and night. It is difficult for me to share, but I must wear heavy pads for protection at all times. I carry extra with me, because I often need them when I am away from home. I know where every restroom is located in every place I visit, because I will need it about every 45 minutes or so. Travel is affected. If we drive long distances, I must stop at least every hour. I am scheduled to have an Interstim®sacral neuromodulator implanted in a few weeks. This is basically a bladder pacemaker that help the brain and bladder communicate with mild electrical pulses. My urologist is hopeful this will help with bladder control. Here is a link to more information: http://professional.medtronic.com/pt/uro/snm/edu/about/index.htm#.VTZpxyFViko
- My brain is often “foggy”. When I am in relapse, one of the most frustrating symptoms is that my brain sometimes can’t process quickly, or remember details clearly. Trying to retrieve a word can sometimes feel like flailing through cobwebs. I have to make a conscious effort to remember names. If a person suddenly changes topics in a conversation, I may not follow. It is helpful if I know the topic before a person gives me details. I may not be able to process all the details unless I know where they are headed in their conversation.
- I have become sensitive to many foods, chemicals, and scents.
- My left side is far weaker than my right. Over time, limping on my left leg has caused my right knee to wear out. In August 2014, I underwent total knee replacement. It was a brutally painful surgery for me, and recovery took a full six months because my MS flared. During those months, the neuropathic pain in my legs was so severe that I could hardly sleep. In addition, I had severe muscle spasms in my legs. I could barely walk. Those were difficult times, when I cried out to the Lord for some relief from the pain. I took refuge in His Word and His promises. And I came through – closer to Him than ever.
I am walking much better now that my right knee has healed. I know there will be more MS relapses. I know I will likely face further losses in the future. I am not afraid. I have the Great Physician as my close friend, and the prospect of complete healing someday in His presence. I believe God has allowed MS in my life as a blessing and as a ministry to others.
Years ago I adopted the words of the Apostle Paul as my comfort verses:
2 Corinthians 12:9-10
But he said to me,
“My grace is sufficient for you,
for my power is made perfect in weakness.”
Therefore I will boast all the more gladly of my weaknesses,
so that the power of Christ may rest upon me.
For the sake of Christ, then,
I am content with weaknesses, insults,
hardships, persecutions, and calamities.
For when I am weak, then I am strong.