Last month, I had an anniversary of sorts. I joined the ranks of the admitted at Providence Hospital in Everett on Tuesday, June 1, 2010. On the morning of June 2, just as I stabbed a fork into my deeply desired hospital pancakes, my neurologist walked in to give me a definite diagnosis of Relapsing-Remitting Multiple Sclerosis. Breakfast was over.
Although I just had my 2nd “anniversary” last month, I approximate that I’ve had this degenerative disease for at least 18 years. It stayed mostly hidden until manifesting unmistakably when my 5th child, Rose, was 6 months old. I used to separate my life into two sections: before kids, after kids. Now I can’t help but separate my life into two new sections: before MS, after MS.
I’ve compiled information, some from various websites and some from memory, into a “report” so that my loved ones can learn about the disease that guides most of my activities. I truly hope everyone I intend this for will read it, and perhaps even pass it along to others who may wish to learn about Multiple Sclerosis.
Multiple Sclerosis (MS) is an incurable disease involving the immune system and the central nervous system. The immune system defends the body from attack by micro-organisms such as bacteria and viruses. In the case of MS, the immune system attacks part of the body itself: the nerves. MS occurs when the protective sheath (myelin) around the nerve fibers in the brain and spinal cord becomes damaged, causing random patches called plaques or lesions. These patches distort and interrupt the messages that are sent along these nerves. ‘Sclerosis’ means scar, and the disease is labeled ‘multiple’ because the damage usually occurs at a number of points. The effects are varied; no two people with MS will have exactly the same symptoms. MS is not contagious, but it is progressive and unpredictable. The trigger to the disease has not yet been discovered, but it is thought that genetic and environmental factors are involved. Research so far has found that in nearly two-thirds of cases, a relapse has been preceded by a viral illness. However, many treatments and medications are available to ease the symptoms and modify the course of the disease.
An estimated 2,500,000 people around the world have multiple sclerosis. These people are generally:
*Young adults – symptoms first appear between the ages of 20 and 40 years.
*Female – 70% of people with MS are female.
*Caucasian – 98% of people with MS are Caucasian.
*Living in temperate zones – MS is generally more common between latitudes 40° and 60° north and south of the equator.
*Have a relative with MS – between 10 and 20% of people with MS have a relative with the disease, suggesting a genetic link.
(I was diagnosed a few weeks before my 40th birthday. I live in the temperate climate of the Puget Sound. I have a first cousin with MS, and possibly relatives in previous generations with "mysterious illnesses" that had them in wheelchairs.)
More than 50 symptoms are linked to MS, and each person develops symptoms differently. They are varied and unpredictable. MS can damage the central nervous system in many different locations, which means no two people will share exactly the same symptoms or exactly the same intensity of symptoms. Many of the symptoms mimic problems that occur with other diseases, and usually come and go. This can create misunderstanding or dubiousness on the part of people who deal with others who have MS, since a person with MS could feel “just fine” in the morning and barely be able to function by afternoon, or vice versa.
Some of the more common MS symptoms include:
*Blurred or double vision (from optical neuritis)
*Numbness or pins and needles in extremities (“parasthesia”)
*Weakness in the arms or legs
*Loss of balance
*Tendency to drag one foot (“foot drop”)
*Loss of coordination
*Loss of mobility
*Problems with or changes in memory functioning
*Speech difficulties and slurring
MS has different forms and progression. Some people with MS may become seriously disabled. Others may have one or two attacks and then remain relatively symptom free for the rest of their lives. The frequency and severity of attacks cannot be predicted.
(I experience varying degrees of parasthesia, weekness in my arms and legs, loss of coordination, fatigue, memory loss, and speech difficulties...so far.)
There are four different classifications of MS:
There are four different classifications of MS:
*Relapsing–Remitting (RRMS) – 85% of people with MS start with this type of disease course. Acute episodes of neurological symptoms occur, which last for days, weeks or months before completely or partially resolving. The intervals between attacks can vary widely but, on average, occur every one to two years.
*Primary Progressive (PPMS) – affects around 10 % of people with MS from the onset. These individuals experience no relapses but suffer a gradual increase of disability, which does NOT recover or reverse.
*Secondary Progressive (SPMS) – occurs in individuals who started with Relapsing–Remitting MS, but their relapses diminish in frequency or cease altogether. HOWEVER, disability continues to accumulate. As of several years ago, about 50% of people who start with Relapsing–Remitting MS develop Secondary Progressive MS after 15 years. However, with the use of disease modification drugs, this percentage has dramatically decreased.
*Progressive Relapsing (PRMS) – this occurs in about 5% of people from the outset, with relapses occurring and disability accumulating between relapses.
Diagnosis and treatment:
Most of the symptoms of MS can also be caused by other conditions and do not automatically mean a diagnosis of MS. As yet, there is no single test to diagnose MS. A number of specialized tests may be necessary:
*magnetic resonance imaging (MRI) of the brain and spinal cord, usually with and without an injection of contrast dye
*a neurological exam to observe functioning of the cranial nerves (these control the senses, as well as how you talk and swallow) in coordination, strength, reflexes, and sensation
*a visual evoked potential test (VEP), during which electrodes are attached to the scalp and connected to an electroencephalograph (EEG) to record brainwaves in response to a series of checkerboard patterns displayed on a screen
*a spinal tap, during which a needle is inserted into the spine at a specific spot between the vertebrae to collect cerebrospinal fluid (CSF). The fluid is sent for evaluation, looking for the presence of oligoclonal bands (an increased number of certain antibodies) -- an indicator of increased immune activity in the spinal fluid
*blood tests to rule out other diseases.
(I had all the tests done, and I undergo an MRI each year in July to check any progression.)
There are two basic rules for diagnosing MS:
*The person must have had at least two relapses (an episode where symptoms were present). These episodes must have been separated by at least one month.
*There must be more than one lesion on the brain or spinal cord.
(I have had three episodes, but my “big one” was the attack that led to my diagnosis. As of last year, I have 10 lesions in my brain and one large one on my spinal cord.)
*Negative: Negative means negative. You don’t have MS. It is possible for the doctor to give this diagnosis only when another definite diagnosis is made that can account for your symptoms.
*Possible: This means that you may have symptoms that look like MS, but your tests are normal. No other diagnosis which accounts for the symptoms has been confirmed.
*Probable: Many people fall into this category when they are first seen by a neurologist. You may have symptoms that look like MS and have had two separate episodes separated by at least a month, but normal findings on an MRI. You could also have an MRI that showed only one lesion in your brain or spine. In this case, your doctor will probably recommend repeating the MRI after a certain period of time (for instance, 3 months) to see if any other lesions appear. Depending on how certain your doctor is that you really do have MS, he may recommend that you consider starting an early therapy.
*Definite: Your case fits the diagnostic criteria above. You have had at least two attacks, separated in time, plus at least two areas of demyelination.
(My diagnosis is definite.)
A popular saying in the MS community is, “I have MS, but MS doesn’t have me!” This is a bit too Susie Sunshine for the likes of me, because you bet I feel like it has me—often. I know what all those people are trying to say, however: don’t let the MS diagnosis define WHO YOU ARE. That’s a tall order for some, including me. My symptoms are a burden on my family, harming my mothering and my marriage. I must fight like crazy to keep it from doing real damage. If I give in to the moods, pain, discomfort, disabilities, etc., I let it hurt everyone. So my job is to acknowledge it, communicate what I need, and not let it take over. Tricky!