Living with MS

February 2016

What Is MS?

Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. (National MS Society) The body’s immune system attacks the coating on the nerve fibers called myelin. Scar tissue forms where the myelin is damaged which is called sclerosis. The scars distort the signal coming from the brain or spinal cord which produces a wide variety of symptoms. Much is still unknown about MS. The disease has been known since the 1800s but a cause is still unknown. Although there are some drugs that may relieve some of the symptoms for some people, there is no known cure or treatment to improve the disease status. Interferon drugs were first introduced in the 1990s. These drugs help slow the progression of relapses for the most common form of MS. Types of MS (National MS Society) Relapsing-remitting MS (RRMS) - the most common disease course — is characterized by clearly defined attacks of worsening neurologic function. These attacks — also called relapses, flare-ups or exacerbations — are followed by partial or complete recovery periods (remissions), during which symptoms improve partially or completely and there is no apparent progression of disease. Approximately 85 percent of people with MS are initially diagnosed with relapsing-remitting MS. Secondary-progressive MS (SPMS) - The name for this course comes from the fact that it follows after the relapsing-remitting course. Most people who are initially diagnosed with RRMS will eventually transition to SPMS, which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without relapses. Primary-progressive MS (PPMS) - is characterized by steadily worsening neurologic function from the beginning. Although the rate of progression may vary over time with occasional plateaus and temporary, minor improvements, there are no distinct relapses or remissions. About 10 percent of people with MS are diagnosed with PPMS. Progressive-relapsing MS (PRMS) — the least common of the four disease courses — is characterized by steadily progressing disease from the beginning and occasional exacerbations along the way. People with this form of MS may or may not experience some recovery following these attacks; the disease continues to progress without remissions. Clinically isolated syndrome (CIS) is a term that describes a first and single neurologic episode of inflammation or demyelination (loss of the myelin that covers the nerve cells) in the central nervous system (CNS) lasting at least 24 hours. (This is not considered MS until another episode occurs) I was first diagnosed with CIS in November of 2005. There were some lingering symptoms but no clear relapses or progression until 2014. I really don’t know what stage I am although I believe it to be beyond RRMS. My neurologist basically said the stages are really a gray area and the way they are presented is changing within the medical community. This is an example of why you cannot get all the most current information online. I was convinced MS drugs would not benefit me because I was beyond RRMS. I really put up a fight against them. The drugs come with a lot of side effects. It is so hard to know what to do when the experts are telling you one thing but your heart says another. One of the most difficult things to do is to ignore the fear and have faith in your decisions. My decisions have always been based on building up my body to heal. It took some convincing but I have finally agreed to begin MS medication. I had to face reality that my MS is progressing and my current protocol had not stopped that from happening. I still have faith I am capable of healing but I have to look at the medicine as a tool to slow down the progression while I continue to strive for wellness. Living with MS can be so hard to describe to other people. MS affects every person differently. This is what it is like for me. Most days I wake up feeling normal. Sometimes symptoms can creep up on me but generally I have at least 2-3 good hours, sometimes more. If I wake up feeling particularly fatigued it may last all day although sometimes it resolves in the evening. My symptoms can flare up at any time but they are particularly worse in the late morning or afternoon. This can vary greatly day to day depending on the heat and how active I am. The symptom that bothers me most around the house or out shopping is brain fog. That is the term I use. It could be dizziness but it is not vertigo and I can usually feel it throughout my body. MS is a disease of nerve damage. When I get brain fog I can feel it in my legs, my eyesight seems a little worse, and I have trouble thinking and remembering a bit more than usual. All thanks to those little scars or lesions. If I sit and relax for a bit it will subside. On bad days I do a little, rest, and do a little more. I guess that is why vacations are nice because there is just not as much to do or think about. I also get tingling in my feet and left leg sometimes although I don’t notice it much anymore because I stopped wearing shoes that tie. Any pressure on my feet would be annoying. Brain fog and the tingling have been around since the beginning in 2005. The most recent symptom that was first noticed in 2014 is weakness in my left leg. This has gotten worse over the last 2 years. It is not an issue of strength although I am sure my left leg is weaker. The muscles just are not firing on all cylinders. It is hard to explain something that is beyond your control. It is hard to accept that I now look for the closest parking space and enjoy using the shopping cart for the extra assistance. When my leg gets tired it’s like I cannot lift it as well. Accepting the progression has been difficult. Two years ago I could walk almost a mile before noticing weakness. Now I notice it most of the time and on a fairly active day I have a noticable limp.

When I see someone in a wheelchair or using a cane I am reminded that I am not the only one with problems. I have told Rich I think the physical aspect could be tolerated a lot more if my head was clear and I just felt better. The unknown is definitely one of the hardest parts of dealing with a chronic illness. I know the best option I have is to try and keep a positive attitude which is particularly hard on bad days. Accepting my limitations has been challenging. I would much rather exercise by myself than around other people to compare myself to. I cannot run anymore or walk for pleasure. I love yoga but my weakness shows through sometimes. I also like riding my bike when I’m feeling good but I have to stay focused to combat the brain fog. Regardless I am still thankful for what I can do. I am just happy I when I finish my bike ride and am able to make it all the way up the driveway. Boy have I learned to appreciate the little things.