The diagnosis was multiple sclerosis. Here’s how a Fresno woman learned to live with it
March is Multiple Sclerosis Awareness Month. Worldwide, more than 2.1 million people are diagnosed with the disease. An estimated 1 million live in the United States. Affecting the brain, spinal cord and nervous system, it is the most common chronic, degenerating, incurable, neurological disease leading to disability in young adults.
Following exposure to extreme cold 28 years ago, I began experiencing numbness and tingling in my hands and feet and was diagnosed with Raynaud’s Disease. Raynaud’s is an illness that constricts the small blood vessels of the fingers and toes, has no cure and is common in those with autoimmune disorders. Within weeks, the symptoms progressed to my legs and torso followed by vertigo, vision and coordination difficulties. I was 36 years old, mother of three young sons and working as a registered nurse. Sensing something was terribly wrong and possibly neurologically related, I went to see my doctor.
Convinced I was “suffering from the stresses of motherhood,” my doctor wanted me to see a psychiatrist. Having a nursing background, I suspected MS, however, the doctor said it was “highly unlikely” and refused to order medical tests stating he didn’t “have a good reason to do so.” Thinking to myself it was the doctor who needed a psychiatrist, I sought the help of a neurologist. After 10 months of trying to seek an answer for my progressing symptoms, an MRI of my brain and spinal cord confirmed I had Multiple Sclerosis. Knowing this wasn’t a death sentence, my initial reaction was one of relief, though many physical and emotional challenges lay ahead.
Most difficult, during this time, was coping with the loss of my father. My family wasn’t prepared to hear additional bad news and dealt with my diagnosis by not really dealing with it. I wasn’t bedridden or in a wheelchair therefore, things couldn’t be so bad. A close acquaintance stated it was a good thing my dad passed because my diagnosis “would have killed him.” Overwhelmed with guilt and shame for being sick, I told few about my illness, fearing being labeled “diseased.” The silence of my secret was deafening and difficult. For 15 years I bore the burden alone.
Multiple Sclerosis is unpredictable and, though not terminal, attacks the protective covering (myelin sheath) surrounding neurons. Symptoms include impairment of speech, balance, numbness, fatigue, spasms and visual disturbances, effects of which alter the quality of life for those who suffer from it. Signals from the brain to other areas of the body are disrupted. Comparisons can be made to the protective rubber coating surrounding an electrical cord. When the rubber is cut exposing wires, connections short-circuit and disrupt electrical flow.
I was diagnosed with Relapsing Remitting MS, (RRMS), the most common form. With exacerbations followed by partial or complete recovery, symptoms vary from one person to another. Determination of which form of the disease a patient has depends on progression and immune system activation. Women are affected more than men with the age of onset ranging between 20-50 years, though teenagers and children have also been diagnosed.
In 1992, no drugs were available to slow disease progression. Steroids were commonly used to treat acute onset and reduce inflammation. Research has led to development of new drugs to suppress the immune system and reduce inflammation to protect the myelin sheath.
Those suffering from MS need not feel alone. Help is available through support groups and the National Multiple Sclerosis Society. It is important to take charge of your health and become your own advocate. If you doubt your doctor or diagnosis, seek a second opinion. Most importantly, don’t give up.
Many who suffer from illness become stronger with a new appreciation for life. Dealing daily with the unknown, I have no regrets of what I’ve lost. Rather than succumb to disabilities, I embrace my abilities. To quote Dr. Martin Luther King, Jr., “If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do, you have to keep moving forward.”
Multiple Sclerosis is what I have, it doesn’t define who I am. I am more than a disease and life goes on. MS is not the end.
Clarice Krikorian of Fresno is a retired registered nurse. She is a member of the Arts and Humanities Advisory Board at Fresno State, CSU Summer Arts Community Board and Armenian Genocide Commemorative Committee-Fresno.
If you go
Each year, Fresno hosts an MS Walk to raise MS awareness and funds to help find a cure for the disease. Walk MS: Fresno 2020 is on Saturday, March 21, at Woodward Park. The site opens at 7 a.m. with the walk beginning at 9:30 a.m. More information is available at nationalmssociety.org or WALKMS.ORG