My Multiple Sclerosis

In July 2001 I was diagnosed with Multiple Sclerosis. I immediately researched everything I could about MS. MS is short for Multiple Sclerosis, a disease that affects the central nervous system (CNS), which is the brain, spinal cord, and optic nerves. MS is an incurable disease. It’s also a complex disease with over 35 possible symptoms. It is also unusual because no two people with MS exhibit the same symptoms or degree of progression. There are about a dozen medication treatment options available, but they do not cure MS. They just slow the progression for some and most are expensive and have terrible side effects.

Since my diagnosis I have encountered many road blocks along the way. I like to share my personal experiences over the last twelve years in hope that it will help others in a positive way.

My name is Margurite. I’ve been married to my husband, John, for 39 years. We’re the proud parents of two great sons in their thirties, two wonderful daughter-in-laws, two grandsons 7 and 12, and one granddaughter one year old. My family and faith have sustained me over these difficult years. I also have siblings, an older brother diagnosed with MS and a younger half sister diagnosed with MS who died 2 years ago from complications of MS.

I worked for a large medical multi-specialty clinic of 250 physicians. I worked in insurance reimbursement and medical coding. I became a Certified Professional Coder through the American Academy of Professional Coders and 2 years later studied and received my certification as a Professional Medical Coding Instructor to teach others medical coding in order that they sit for the certification examination. My position required me to work with all the physicians regarding medical coding which are the codes of the medical services performed that decide what a physician is paid by the insurance companies and Medicare. Every medical code that is billed must have a coordinating diagnosis code to prove medical necessity. Few patients realize that the diagnosis code attached to your office visit or medical procedure stays on your medical record forever. Once a physician’s notes are entered into the patient’s medical record, they can never be deleted or changed, and the notes become a legal document that cannot be altered. The only thing the physician can do is dictate an addendum stating a mistake of the diagnosis. It was part of my job to teach physicians not to give a patient a diagnosis until there was documentation to support that diagnosis. In other words, don’t give a patient a diagnosis they might not have because it stays with them for life. How does this relate to Multiple Sclerosis? I think I have seen cases where patients may have had Multiple Sclerosis, but were misdiagnosed (as I was) for years with diagnoses of lupus, fibromyalgia and a plethora of other autoimmune diseases. It has been my experience that people I meet, when they find out I have Multiple Sclerosis, relate to me that they have a friend, relative or coworker that has Multiple Sclerosis. The statistics that approximately 400,000 Americans have MS comes from the World Health Organization and they compile this data from the diagnosis codes that are billed to insurance companies. I believe there are many more patients with MS that are not diagnosed. The only way we are going to cure MS is by research and research organizations receive funding based on the number of persons diagnosed with that condition and disease. If we’re not getting the correct number of correct diagnoses of MS cases due to misdiagnosis, we’re losing out on needed funding for research.

Multiple Sclerosis causes great damage to you mentally and physically. You often lose the ability to do the things you love to do. For me, that was losing my job, losing the ability to play tennis, suffering debilitating fatigue, balance problems, taking enormous amounts of medications, now using a cane, walker and finally a power chair. It causes pain and frustration. It’s a condition that gives you many problems and takes away even simple pleasures. I love to cook, but often find it difficult due to extreme fatigue and wobbly legs and wobbly legs lead to falls which I have experienced breaking my right arm, right wrist and both feet falling on my stairs and in my home. It’s a disease that tries to take away your dignity and independence. How embarrassing to be in a store shopping and lose bladder control (even though you’re wear a Depends) or losing bowel control, making a horrific mess. I have to adapt to having my husband do our grocery shopping, laundry, and some cooking during my flare ups. Of course he’s a sweetheart, never complaining and assisting me in every way possible, but he does not shop like I use to, does not wash clothes like I use to, or cook like I do. I never complain because I am so blessed to have him as my caretaker and have learned to stop obsessing about these things, count my blessings and accept that it does not have to be done perfectly.

I have adapted to my new way of life. I’m no longer the “old me”. I have become a different person, but enduring my struggles has made the “new me” a stronger person. I like to tell people about topics and situations I have encountered and tell you how I made my life simpler and more manageable, still getting to participate in life, not being left out. I am very "into" promoting MS Awareness so that people will have a better understanding of what the day in the life of a person with MS is like, and how important it is to fund research for MS to find a cure for this incurable disease.