Multiple sclerosis. Is that the disease that puts you in a wheelchair or leads to a nursing home? Montel Williams… Richard Pryor… Annette Funicello… all names associated with MS, and isn’t there a mountain climber or two that have it?
Confused? You are not alone. That’s why the Multiple Sclerosis Foundation recognizes March as National MS Education & Awareness Month, and the National MS Society designated March 8-14 as MS Awareness Week.
Throughout the month of March, I will offer glimpses into my own life with MS. While there is no such thing as a typical case, those who are familiar with MS will nod in recognition. If you are not familiar with MS, please allow us a few moments of your time during MS Awareness Month.
Next: A Diagnosis Odyssey
It began with a seemingly benign but persistent tingly feeling in my upper right arm. It was the kind of thing you tend to dismiss and certainly not the kind of thing that makes you rush out to see a doctor.
It could be carpel tunnel syndrome, a pinched nerve, too much time at the computer. It will pass. But days turned to weeks and my arm became progressively weaker. When the arm would be ignored no longer, I visited my general physician, who quickly discovered a pronounced weakness in my right leg as well. Concerned, he wasted no time arranging an appointment with a neurologist, but it would have to wait several weeks.
Soon my other limbs got in on the act and went from tingly to numb to near-paralysis in short order. Two or three steps at a time was all I could manage. Driving or working were out of the question. Ruling out stroke and other immediate threats to life, I was advised to be patient until the neurologist visit.
By the time my (now) husband and I finally sat in a neurologist’s office, all symptoms had completely vanished. He seemed skeptical but ordered a series of tests that included MRI of the brain, spinal tap, blood tests, and evoked potentials (short electrical impulses to arms and legs, needles inserted into muscles).
Several weeks worth of tests and much angst produced only vague results. The MRI of my brain clearly showed a smattering of white spots (lesions) that were dismissed as nothing more than evidence of chronic migraines. All other tests were inconclusive.
The neurologist wasn’t concerned and we were content to put the matter to rest. Relief was short lived when, a few weeks later, that tingly feeling returned. Things progressed more rapidly this time, rendering my limbs useless within days and gripping us with fear.
Again, by the time I was seen by a neurologist, all symptoms were gone, resulting in a normal neurological exam. Repeat tests revealed nothing more than the first round, and we came away with the distinct impression that the doctor questioned my sanity.
In the span of a few months, the cycle repeated three times. Although my general physician verbalized his suspicion of MS, the neurologist would have none of it. “You do not have MS!” His exasperation with our questioning was palpable. “If it happens again, we’ll run the tests again. As far as I can see, there is nothing wrong with you.”
Our lives in chaos, we pleaded with our general physician to refer us to a respected teaching hospital whose doctors were familiar with MS. On the appointed day, two doctors went over the MRI scans we brought in with us. “Did you even look at these?” They sounded almost accusatory. Of course we did. We had these scans in our possession for months and repeatedly tried to make sense of the images.
Feeling rather sheepish at that point, we listened for the long-awaited second opinion. “These spots are evidence of scarring. This is MS.” The scans, along with detailed patient history and neurological exam, all pointed to multiple sclerosis. “Of course, we’ll have to do a series of tests to rule out other diseases, but let’s go over MS treatment options while you’re here.” Going over treatment options sounded fairly definite.
One of the doctors proceeded to draw a graph with lines indicating the nature of relapsing/remitting MS and several types of progressive MS, and how various disease-modifying drugs may help keep me on the relapsing/remitting line of the graph. With no cure, it’s all about slowing progression.
A week later, I received confirmation of diagnosis by email. I don’t know how one is supposed to react when told they have a chronic illness. It’s definitely not the same as hearing you have a terminal disease, but it’s not like hearing you have a broken bone, either. This powerful but unnamed presence in our lives now had a name — and a role in our future.
Our six month odyssey toward diagnosis, while extremely stressful, was rather speedy for MS. You see, there is no one specific test for MS and the long list of symptoms vary widely from person to person. Most people start out with the relapsing/remitting form of the disease, creating a frustrating game of hide-and-seek for both patient and doctor. Diagnosis can take years in some cases, especially if extensive remissions take place. The waiting game is emotionally exhausting.
A sense of relief at diagnosis is common, but then you have to figure out how to handle the beast.
Next: What is Multiple Sclerosis?
MS is a neurological disease in which myelin, the substance that protects neurons, is damaged, forming lesions in the central nervous system that interrupt the transmission of electrical currents to the rest of the body. Relapsing/remitting MS, the most common form at onset, causes flare-ups followed by periods of remission; there are several types of progressive MS in which symptoms worsen over time with no remissions.
Symptoms vary greatly from patient to patient — and from day to day — and include fatigue, numbness, visual impairment, slurred speech, difficulty swallowing, cognitive impairment, tremors, vertigo, pain, depression, lack of coordination, paralysis, and blindness. Prognosis is near impossible.
MS is more common in women. Most people are diagnosed between the ages of 20 and 50. Due to MRI, more young adults and children are being diagnosed with MS. It is estimated that 2.5 million people worldwide have MS; approximately 200 people are diagnosed with MS in the United States each week.
There is currently no single definitive test for MS. It is diagnosed through neurological exam, clinical history, and a series of tests, along with elimination of other diseases.
MS is not contagious. The cause remains a mystery; a combination of genetics and environmental factors is one avenue that researchers are pursuing. Research into the cause and cure is ongoing.
Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.