So, You Have MS. Now What?: My Personal Journey with Multiple Sclerosis

by Grace Augustine

Synopsis

Ever wonder what having an autoimmune disease is like? In this little book, the author explores the world of Multiple Sclerosis. It is a concise clinical explanation of the disease as well as the author's own personal journey.

Release date: January 27, 2016

Print pages: 66

Sample

IN THE BEGINNING Water aerobics is an awesome way to expend energy, burn calories, tone muscles, and lose weight. I loved being part of the group of aquatic ladies back in 2003…until I tried getting out of the pool after a session. My left leg was numb from the hip to the toes. I felt nothing, no sensation at all. It wouldn’t move. I was petrified. I tried calling for help, but nothing came out of my mouth. All of the other people in the class were gone and the pool attendant was of little help because he wanted to close and leave. I drug myself along the concrete to the bench by the fence where I pulled myself up. I sat down and kept rubbing my leg, willing it to have feeling. The attendant kept looking at me and looking at the clock. “I know. I’m sorry. Just give me a minute.” I gathered my wet towel, stopped by the locker, grabbed my clothes, and snail-paced the entire way to my vehicle, dragging my left leg. The next morning, I made an appointment with my doctor, who, after seeing me, had no explanation of the symptoms. The feeling had returned but I was experiencing foot drop. He referred me to a neurologist in Cedar Rapids. My appointment was in two weeks. During that two-weeks, I fell many times because of catching my toe on the carpet or the cracks in the sidewalk. I’d fall, look around, get up, and continue what I was doing. I look back on the events that happened remembering the bruises. I realize now how hazardous it was for me to walk without a cane or assistance of some kind. I saw the neurologist, who was an older man. He deemed it necessary to do a lumbar puncture (olden day terminology was spinal tap.) He tried to do this procedure in the office and after the fourth try sent me to the hospital The procedure was done under fluoroscope and much less painful! Because nothing congruous showed on the completed tests, this neurologist conferred with his colleague. Another appointment was made, I was sent home and another week would pass before answers could happen. At the next appointment, a nurse took me to a holding room where vitals were taken then showed me to a room where I’d be examined, yet again. The new neurologist, a younger, much sassier man, walked into the room. He had attitude! It was attitude I wasn’t sure I liked. He dominated the conversation. Each time I tried to ask questions, his hand came up to halt me. His words still…well, just piss me off. “Are you a doctor? Are you a nurse? Do you have a degree? If not, I suggest you just listen.” Needless to say, I was in tears by the time I walked out of his office. The diagnosis was that I was psychotic and that the foot drop was just a one-time thing that would heal, given time. I phoned my physician before I left the neurology parking lot. I was an emotional mess. As I sobbed through the phone relating the events I’d just experienced, the receptionist told me to come in immediately. I had a thirty-mile drive home, to get to my doctor’s office. I was trembling, tears streamed down my cheeks. The nerve of that man! I am not psychotic. I have never been psychotic. I blasted the radio and put the windows down. It was the only way I was going to make it west on Hwy 30. Thank God for my physician who calmed my fears and dried my tears. He explained to me that the neurologist was dead wrong in how he handled my appointment. “I feel we need to send you to Mayo Clinic to get some answers. I will schedule the appointment,” my doctor confirmed in his empathetic Jordanian accent. Random headaches began and my stupid left leg still refused to move the way I commanded it to. This added to the daily frustration of trying to run a household and work two full-time jobs. I was an administrative assistant at my church and I also walked the sidelines at every high school football game every Friday evening, as well as attending all of the other high school sports activities…I was married to a newspaper sports editor.

THE MAYO EXPERIENCE

In mid-July of 2003, I made the trek to Rochester, Minnesota to the Mayo Clinic campus. If you’ve never had the pleasure of seeing this beauty, you must put it on your list of things to do, if for no other reason than to experience the grandness, the brilliant use of space, the unique shops, the underground subway level that connects the entire medical plaza, and the beautiful hand blown glass artwork that hangs from the ceiling in the entrance of the Mayo Building. I met with the primary neurologist assigned to me for that appointment, Dr. J.D. Bartleson. He looked at the medical records my physician had sent, explained to me the battery of tests that I would need during my three-day stay, and handed me a stack of papers with directions for the appointments for the rest of my day. My first test, the dreaded MRI. I’m semi-claustrophobic. This is not a good thing. It’s late afternoon, I’m tired. I’m stressed. Now, I have to lay flat on my back in this sausage casing-like tube for an hour for imaging of my brain and spinal cord. Ka-chink, ka-chink, ka-chink…bada, bada, bada…buzz, buzz, buzz. Over and over for three minutes. The table moves. The next test is five minutes. The table shakes and again, ka-chink, ka-chink, ka-chink. The table moves me out, the nurses infuse the contrast, and back in I go. Sigh. End of day one. Day two began early. Another neurologist. This one was from Scotland. He performed the standard nerve testing and made his notes. Mind you, these “visits” are an hour or more long. The patient is put through strength testing, tuning fork testing, and my most favorite…lets poke you with a sharp instrument testing (the point of a safety pin) along all of your nerve meridians. After going through the same exact testing with a third neurologist, this one from China, it was lunch time. We made our way down to the subway level, grabbed lunch, and kept a close eye on the time. An hour is like minutes in this expanse. I was mesmerized by the people: young, old, crutches, wheelchairs, bandages, amputees, Americans, Africans, Europeans…all there for varying reasons. Some wore suits, some were in colorful native attire. People watching passed the time as I was pushed along in the wheelchair. Two more appointments and day two would be history. Back up to 8th floor neurology clinic to see yet another neurologist and down to the lab for additional bloodwork. I can do this. This neurologist, from Canada, performed the same tests, made notes, and told me to enjoy the rest of my day. End of day two saw dinner at a restaurant close to the medical plaza and a welcome, but fitful night’s sleep. I never sleep well in hotels. I don’t know if it’s the strange noises, the smells, or just the beds in general. This time it could have been the fear I had in my soul regarding the diagnosis. I had no clue what was wrong, only that something wasn’t right. The headaches were stronger and more frequent, the falls were happening at least once or twice a week. My energy level was at rock bottom. Something was wrong and someone needed to figure it out and fix it. Day three of this journey takes place back up on 8th floor in the neurology clinic. The exam rooms are small and antiquated…wooden exam tables, old-school paintings and décor. There’s not room for more than three people. Dr. Bartleson, Dr. Cross, Dr. Keegan, and Dr-I-forgot-his-name walk single file into the room. The three neurologists lean against the exam table, Dr. Bartleson is in his chair at the computer, and I am in the chair next to the computer desk with my husband on the other side of me. “After visiting with my colleagues,” Dr. Bartleson begins. “We compared notes, carefully studied the MRI results and bloodwork. Collectively we have come to a diagnosis. You have primary progressive multiple sclerosis.” I was speechless. I didn’t know what multiple sclerosis was, let alone how to face the fact that I now have this disease. I know the doctors each took turns explaining different aspects of the testing to me, but it was like seeing their mouths moving and hearing no words. Dr. Bartleson gave me information on the disease. He told me to read it and if I had questions or didn’t understand any of it to call or email and one of them would get back to me with answers. He handed me a paper with another appointment date and off we went. WHAT’S NEXT? The ride home was silent. I have MS. I have primary progressive MS. I’m sure I was in shock. I don’t remember getting home, only that I did. I spent the next month moping…literally moping, doing the oh-poor-me thing. I did nothing but sit on the couch, every day/all day. It didn’t work. I became more and more restless, edgy, needing to do something. Each time I suggested going somewhere I was shot down because I needed to rest, or because of a different reasoning. I was taught in my sophomore year of high school by a kick ass teacher that knowledge is power, and thankfully I had a computer. I was no longer wasting away my days. Somehow I was going to figure all of this mess out. This is where I get all clinical and technical on you. To answer your question before you ask, yes, I do understand what I’m about to type. I understand it completely because I researched, read, and ingested it time and again until it settled into my very soul. It was the only way I could help myself. In helping myself, I could help others; that was my new cause, helping others understand their MS diagnosis and making sure they knew it wasn’t the end, but a new beginning. I researched multiple sclerosis for six weeks. Day in and day out I was at that computer reading this article that lead to another that lead to another. I read science all of the journals, I read medical journals. I read research journals. I logged into the actual science class at the Cleveland Clinic where I could use their information to research it further. I looked at chromosomes that were affected. I was obsessed with this disease and what it was doing to me. What I learned (here comes the clinical part): multiple sclerosis is a disease of the central nervous system taking root in the brain and/or spinal cord. Rogue T-Cells develop and begin attacking the myelin surrounding the nerves, eating at it and causing a misfire in information from the brain to that specific nerve. Let me explain. This becomes very clinical in word, but please bear with me. I promise you will learn something about this disease. I promise. T-Cells are a specific type of lymphocyte…which also is a part of white blood cells. There are many parts to white blood cells, known also as leukocytes. Eosinophils, neutrophils, basophils, lymphocytes, and monocytes naming a few without becoming too technical. These little darling T-Cells are quite interesting. They do a variety of jobs depending on what they’ve been programmed to do…for what we are talking about I will just generalize and say they are part of the adaptive immune system. Some of these T-Cells become rogue, now called autoreactive lymphocytes. They somehow get into the brain through the blood/brain barrier. They now see the coating (myelin)on the nerves as a foreign material that needs to be destroyed. Seeing as it’s their job to destroy the bad in our bodies, they go to work on the very good coating, causing lesions and open nerves. Remember earlier when I spoke of the lumbar puncture? A small amount of spinal fluid is drawn. The test performed shows normal/abnormal oligoclonal banding. MS involves the loss of oligodendrocytes, the cells that create and maintain the covering of our nerves…myelin. Think of the plastic coating on a batch of copper wires. That plastic protects from electrical shock. When that coating is gone, the chances of being shocked are greater. So it is with MS. When the T-Cells eat at that coating, or myelin, and destroy it, the nerve endings lay open and exposed. There is no longer a complete connection from the source (our brain) to the receptor (nerves.) When reading an MRI with contrast, the radiologist is able to see the lesions. They look like tiny white polka dots in the brain. These are signals to look further along the spinal cord for possible additional lesions. For additional information on multiple sclerosis or how the white blood cells and T-cells function, please research the information for yourselves at these wonderful websites. It only takes a moment to do this. https://en.wikipedia.org/wiki/T_cell and https://en.wikipedia.org/wiki/Multiple_sclerosis

BACK TO REALITY

I learned that my MRI showed multiple white polka dots, or lesions, in the white matter and grey matter of my brain. Thankfully the brain stem itself is not involved in any of this. I do have a large lesion on my spinal cord at the C5-C6 location (where the cervical vertebrae attach to the thoracic vertebrae) and another smaller lesion toward the bottom of the thoracic vertebrae near the lumbar area. Can I feel them? No. You cannot feel the lesions. You experience the damage done, though, that’s for sure: brutal fatigue, lack of sensation, strength, and mobility in my left leg, inability to detect temperature (picking up a can of juice in the frozen food section and having my hand feel on fire) as well as a number of other symptoms. Enter the year 2004. I learned to deal with things as they happened. I kept my doctor appointments, was fitted for an internal shoe brace to keep my foot static so I wouldn’t trip anymore, stopped walking the football field, and left everything that had become my normal. The brace became too abrasive to my foot and I stopped wearing it. It was made of hard plastic, like a shell, that cradled my calf and foot. It had Velcro straps that secured the brace around my ankle and calf. The hard plastic hurt to walk on or stand on. I tossed it in the closet. Another bad idea. Throughout the process from diagnosis to June of 2004, a complete communication breakdown broke my shaky marriage and forced me to leave. I was not staying in a house that was not a home or a marriage where we lived on separate floors. I wasn’t going to sit on the couch and do nothing because I had a disease. With MS you don’t know if you have your next breath. That is why it was so important to me to live each moment to the fullest. My husband wasn’t on board with that. He was unwilling to go to counselling. Other factors of my marriage led to my hasty retreat. It wasn’t only the MS. But the MS was the catalyst for me to begin living my life. My sons and a couple good friends packed and moved me in one day. I now had a house that felt like home. It was peace filled. It was inviting. I could do what I wanted, learn what I wanted, be who I wanted without opposition. I continued working as a floral designer and was involved in church. Two years passed and I decided to change jobs. I applied for a chiropractic assistant position in Cedar Rapids and was hired following the interview. I loved my job, however, the constant busyness of the office led to more fatigue. The fatigue led to more falls, including a couple inside the office. In December of 2006 I had a major MS flare-up that hospitalized me. It forced me to make the decision to quit my job. The treatment for MS flare-ups is prednisone or a three to five-day course of IV steroids in the form of Solumedrol…liquid steroids. This drug is not body friendly. In some instances, it makes you feel worse than you did before the flare-up happened. It causes stomach cramping, insomnia, uncontrollable energy, ravenous hunger, weight gain, and facial swelling. You feel totally out of control, but, your MS is managed, the inflammation is gone, and you aren’t in pain. What a double-edged sword! After my rehab time, I knew I couldn’t just sit and do nothing. I went to another floral shop, in a town a few miles away and began working part time on Valentine’s day in 2007. Although my hours have decreased dramatically, I’m still with the same shop.