My Perspective Living with Multiple Sclerosis

Melinda Smith

As the patient you can – with explicit detail – relive every significant moment of the day your disease first presented itself. This day for me was July 2, 2006. While enjoying a summer vacation with my family in the beautiful area of Southport, NC, I woke up to see what the day would bring. Would we canoe, snorkel, or go fishing on this sunny morning? The possibilities were endless in this picturesque, quaint coastal community. I noticed the annoying pain on the left side of my head, so I reached for the Tylenol. I was fortunate to have packed this, as I very rarely took any medications for pain, especially a headache. I hurriedly swallowed the medication and ran downstairs for breakfast. An hour passed and I remember thinking to myself, surprisingly, this headache continues, but I did not think much of it. At the time, my children were 5 and 3 years of age, so this day would be very busy. I mentioned to my husband, Rusty, that I did not feel great, so we decided to take the children to the pool for a bit. This would allow me time to sit until the headache subsided. Hours passed by, “Mom, let’s go to the beach” the children pleaded. My husband continued to ask if I was ready to go. They were becoming impatient with my delay. My mind was ready for the next activity, but my body was not. It all came on so quickly. As I stood up, the sun and the reflection off the crystal clear pool water began to blind me. It seemed terribly warm that day. My skin burned as the sun rays beat down. As my family demanded once more, “let’s go mom”, I felt my body began to wither, similar to a flower that had been neglected without water.

Walking the short distance from the pool to the golf cart, I felt completely and utterly exhausted. My head pounded, the heat was unbearable, and I began to notice tingling on the left side of my face. Tingling; pins and needles, prickling, stinging sensation. What I did not realize was that I was experiencing my first symptom of Multiple Sclerosis. I asked if we could return home for lunch and resume with activities after lunch. Once we returned home, I excused myself upstairs for a moment to rest. I immediately popped 2 or 3 more Tylenol (I forget how many), turned the thermostat down, removed my clothing, closed the blinds and crawled into bed. The dark room was comforting. The cool, fresh sheets seemed to calm my burning skin. I pressed my fingers as hard as I could into my left temple trying to relieve the debilitating pain. I felt nauseous. Hours passed. Rusty and the kids decided to go fishing without me for which I was very relieved since I would not have to leave my cool, safe room. I woke up later in the afternoon to Rusty standing over me, saying “Dinner is ready”. “WHAT”! I shouted, is it dinnertime? Where are the kids, and why have I slept all afternoon? As I say this, I am surprised my head now feels like a sledgehammer banging into my skull. My skin burns to the touch; my vision is now blurry even though the room temperature is nice and the surroundings comforting. I knew it was very important for me to get out of bed, engage with the children and press on because, after all, we were on vacation. It was my responsibility and this was just a freak thing that would resolve itself. However, at the same time I was bewildered by all the unfamiliar sensations and a bit worried. The family had dinner, but the fatigue I felt was too much. I went back to bed and told myself it would all be fine in the morning.

The following morning at 7 am, the kids ran into our bedroom, jumped on the bed with excitement, ready to start the day. Rusty was cooking breakfast and all I could say was “five more minutes and I will be downstairs”. Nicholas, my son, decided to lie with me until I was ready to get up. He played with my long brown hair and told me how MUCH he loved me. My daughter, Kayla, was a bit more anxious. She was excited and ready to go spend the day with the family. As they pulled me out of bed, laughing and giggling as children do, I felt like I had run a marathon overnight. Filling my lungs with air was tiring. At this moment, I knew something was definitely wrong with my body. As I walked downstairs, I thought, what do I do next? The last thing anyone wants to do on vacation is go to the doctor. Could I manage this myself? Surely, this will go away and I will not have to inconvenience my family for another day. All these thoughts went through my mind. Needless to say, as the week progressed my stubbornness kept me from scheduling a doctor’s appointment while out of town. Instead we decided to wait and see my primary care physician once we returned home. I continued to be miserable and missed much of the week with the family. Rusty worked hard, like a single father entertaining two young children for the remainder of the trip.

The following week, I made the appointment to see my local physician. In the examining room I explained all the random, troublesome symptoms I had experienced the week prior. He did a brief exam, looked at me without concern, and said, “Let’s do a CBC and go from there. At this time, neurological problems were not mentioned, and I certainly did not think any different. I waited a few days for the follow-up visit with my Dr. My inquisitive nature was anxious to hear the results and solve this problem quickly. The day I did return to meet with him, he explained everything looks normal, except for the elevated IgG levels of the Epstein Barr virus. This indicates a recent infection of this, and I feel confident this is more than likely your problem. He explained, no treatment is necessary and you should be back to normal soon. I remember him scribble his signature on the paperwork as he signed off on the diagnosis. I was pleased to hear it was just a virus, even though I felt awful and the exhaustion was overwhelming.

A few weeks passed. By this time it was the beginning of August and I was becoming impatient and more concerned because I felt no better. In addition to the current symptoms, new ones had appeared. I noticed I began to lose weight, my hair was falling out in clumps in the shower, the top of my head would burn and although the numbness was transient, it remained active. My hearing began to change. It felt like my ears were full of water with intense pressure. I decided to visit my trusted ENT. He completed a full exam and stated,” I do not see anything on examination; however, I believe it is a good idea to have a brain MRI just to be on the safe side”. Over the next week I waited patiently for the morning of the MRI. The morning I arrived at the hospital I was unclear what to expect. The volunteer took me from radiology to the MRI area. Once I was checked in, the nurse began to ask me a host of questions which I answered with confidence. I changed into this oversized, unfashionable hospital gown, and then walked into the MRI room in my bare feet with the key to my locker. The nurse instructed me on how to lay my body on this bed which slides easily into this large, white cylindrical machine. The sound of the high tech Magnetic Resonance Imaging resonates throughout the room… swish, swish, click, click. The pattern was repetitive. This was definitely unfamiliar territory.

As I lie in the bed, she put a white helmet on my head and then snapped it closed. The swish, swish, click, click continued in the background. I explained to her I was comfortable and ready to begin. The nurse patted my arm, left the room and I lay there quiet and alone. Suddenly, I felt the bed jerk. Then I heard the calming voice of the nurse over the ear phones in the other room describing what I should expect next. As the bed slid into the round MRI machine, I closed my eyes and tears began to run down my face. I cried for most of the test and was glad when it was completed. I still do not know why I wept; I wasn’t afraid, at least not afraid of the MRI. When we were finished, the nurse said, “Your doctor will be in touch”. That’s it I thought. I get nothing from the technician? I was naive to this process and I quizzed the technician looking for results. Of course she could give no indication of what she saw on the images so I left without any new information.

A few days later it was a warm sunny afternoon when the phone rang. It was my ENT. He began to explain how my current brain MRI images did show a few non specific lesions in the white matter. ” What is a lesion?” I thought. “Please explain”, I asked. As he started to explain what this could mean I remembered nothing but the words Multiple Sclerosis. When I heard the words MS, I knew it was a neurological illness, which in my mind related to a person in a wheelchair. However, I had no idea exactly what this meant. We discussed things further, and we both agreed a visit with a neurologist would be the next step.

That day I was referred to a highly regarded medical teaching institution in NC, and the appointment was made with a respected neurologist. The unfortunate part was, I had to wait 4 months for my scheduled visit. Being new to this process, I was again naïve that 4 months was an unacceptable time frame for a young mother of two having neurological problems to wait for a Dr. appointment. Over the next four months, I continued to feel the residual of all the symptoms which had presented themselves the past July, but it was tolerable. I had lost over 10 lbs; I slept a lot and just took things day by day.

After 4 months, Rusty and I were excited to be driving to the long awaited appointment. Nervous was not an adjective I would use. Rather, I was anxious and could not wait to speak with this physician about the changes my body had felt over the approximate last 7 months. After waiting 1.5 hours to see the neurologist, he came in and introduced himself. He was an older gentleman, stern but polite. He seemed a bit desensitized to the entire situation from the beginning. As I described my story, he continually took brief notes and asked several questions. He then did a complete neurological exam, which I passed with flying colors. He briefly reviewed the brain images on his computer. As I sat back down on the table, he looked at me, smiled and chuckled with a hint of arrogance. “Mrs. Smith you do NOT have Multiple Sclerosis. I’m sorry I do not know exactly what may be causing your symptoms, could you be depressed? The only suggestion I can give is to administer antidepressants and see if this helps”. I quickly responded, “Thank you doctor. I appreciate your time, but I am not depressed”. I will never forget seeing his face, hearing his words, and watching him become anxious to leave the room as I respectfully declined his suggestion to medicate. As the patient, I was very confident that depression was NOT an issue for me at this time, and quite frankly I was angered that the doctor lacked interest in hearing more from the patient. I remember Rusty was so happy to hear I did not have MS, as was I. However, as we left the hospital that day, the black cloud of fear continued to hover over me. I knew my body, and I also knew we must move forward to find a physician that could offer a different approach.

That night I sat alone at my computer asking myself, “What next”? At this point, I had educated myself on Multiple Sclerosis because in my heart I honestly felt this was my problem. I remember surfing the web for hours trying to decide which medical institution would be a right fit for me. I came to the Johns Hopkins Medicine website which is located in Baltimore, MD. I read through each of the 11 neurologist CV’s and all the details of their world renowned Multiple Sclerosis Center. I knew this is where I wanted to be seen. Although, it seemed kind of silly to jump on an airplane and go to another state to be seen by a MS expert when I was just told I do not have MS. So I talked myself out of it. Looking back, I now know it was a spiritual thing that eventually led me to Johns Hopkins. But for whatever reason, over the next 4-6 months I sought out and was examined by many physicians within NC, (not all were neurologist) who tried to help me.

Close to a year had passed since that warm July day I woke up with the annoying headache and 25 doctor visits later, I was not one step closer to solving this conundrum. I felt broken and worn down. Without a clinical diagnosis I was unable to help myself and this was frightening. My family was beginning to question me, my children were being ignored, my marriage was suffering – I felt like a gray empty shell. I had lost 15 lbs, my hair was falling out, the numbness would continue, my vision was blurry and I was a mess. The confidence I once had was diminishing. Not only did I experience the physical symptoms every day, but I knew the emotional aspect was taking its toll. I never said this out loud, but I wondered, “Am I crazy, and is this all in my head”? It was a kaleidoscope of negative emotions. I cannot recall the exact day I rose above all the negativity, but I did. I made the call to my ENT and asked for the referral to Johns Hopkins to see a neurologist who specializes in Multiple Sclerosis. He happily obliged and promptly made the appointment.

A short time later it is October 2007 and Rusty and I are driving to Baltimore for my first appointment at the world renowned Johns Hopkins Hospital. It was an easy 5 hour drive from NC. We laughed and made idle chitchat as I was already very nervous. We arrived at the Brookshire Suites around 11 pm, checked in and quickly settled in for the night. I laid awake most of the night barely nodding off as I went over in my head every detail of my life over the past year. I knew a patient’s history was critical to a physician and I had just one hour the next morning to tell my story. Wake up call arrived all too soon at 5:30 am, but Rusty and I were anxious and ready to go by 6:30. Driving to Johns Hopkins through the inner city was a harsh reality that my life isn’t so bad, even with an undiagnosed illness. My compassionate side wanted to reach out to each and every face I saw.

As we entered the building many of the lights in the Outpatient center were turned off. There was no hustle and bustle quite yet. Considering our appointment was at 7 am, this was not a surprise. We made our way to the Neurology Department on the 6th floor. As I walked off the elevator, I began to feel the adreline rush. I was excited, nervous, scared and confident all at once. We walked to the check-in area and no one was there. The lights were dim and it was pitch black outside the glass windows that surrounded me. I could not sit, so I paced waiting to find someone to greet me. It was 6:50 am, as I turned around I see a man walking briskly toward us. I whispered to Rusty “this is my new doctor”. I immediately turned my head, as I did not want to stare. He approached us and we simply stated “good morning’’ to each other as he passed and entered two doors which led to the back. A few moments later, he reappeared. We both reached out for introductions. “Hi Ms. Smith. I returned the cordials with “hello, my name is Melinda Smith and this is my husband Rusty”. As we followed the neurologist through the doors, we had small talk about our trip, where we were staying, etc. I recall thinking this doctor must be very dedicated to come in before 7 am. Once entering the room, I already felt pressure, not from the doctor but from me, to say all the right things to this highly respected neurologist. He pulled out his pen from his lab coat pocket and began with the questions. The next 30 minutes we discussed the all too familiar story which I knew by heart. He was very thorough even to ask about my ancestry background. I enjoyed talking with him; he was comforting to me, not arrogant. He excused himself to review the MRI scans. Once he returned, we then went outside the room for the neurological exam which I passed with flying colors. As we walked back into the examining room where Rusty was, he put his arm around me. It caught me by surprise as I had not experienced this civility before. We sat down, and the neurologist began to explain how he was uncertain the etiology of my symptoms and with no conclusive test pointing to MS it made the situation complex. He continued to explain how many illnesses can mimic Multiple Sclerosis and he felt like we should focus our energy on ruling those out first and foremost. To this day I recall his words, “Ms. Smith, I will work with you until we figure this out”. The one thing patients want more than anything is to tell their story, BE HEARD, feel compassion and have hope. This is exactly what occurred. He listened to the patient and ironically, never asked if I were depressed.

Over the next year, patience was a virtue. We tested for Lyme disease, lupus, sedimentation rate, vitamin D levels – the list goes on and on. I imagine I was not the most complacent patient during this time, but we pressed on. It was now the summer of 2008 and I began to feel extremely poorly once again. The heat was intense, I began to lose more weight, and all the transient electrical feelings in my body were so difficult to articulate. And the neurological feelings that had historically occurred on the left side of my body, had now begun on the right side, as well. IT was everywhere, all over. The migraines were debilitating. My neurologist and I decided to perform another brain MRI to see if any changes had occurred.

Several days passed, it was a Tuesday morning when I received the call from my doctor. He immediately began to explain the changes on my most recent MRI. “Evolving white matter lesions have appeared within the corpus collosum on your images, which is a broad band of nerve fibers joining the two hemispheres of the brain. This is a classic area where MS lesions can appear; therefore, I believe these findings can support a more definitive diagnosis of Multiple Sclerosis”. All the while he explains this life altering diagnosis in a very professional, but compassionate and sensitive nature. At this point I wasn’t afraid, but relieved to be validated. Many would consider news of this to be anything but relieving. However, having a label to adhere to my neurological problems would give back the confidence and hope that had diminished over the past year.

It was not until sometime after my first neurological episode that I began to struggle with feelings of sadness. As Multiple Sclerosis progresses, emotional changes in the brain are a very common occurrence that many people do not realize. From my experience, I initially looked at depression as a sign of weakness; therefore, I was hesitant to reach out for help. Family and friends wanted to offer me support, but I believe they were equally afraid and unable to engage and articulate their own emotions. I did eventually reach out to my neurologist for help with the depression. He was sensitive to depression with MS and immediately referred me to the help I needed. I then met with a neuropsychiatrist who specializes in understanding emotional changes within the brain related to neurological illness. From the beginning, he was and continues to be such an important part of my life. He helped transition me from a very unhappy time in my life to the happy, healthy and thriving person I am today. He has taught me many important coping skills while living with an unpredictable disease. He continues to teach me how to trust and to always recognize the good Multiple Sclerosis has brought to my life.

Experiencing the negative aspects of MS, the challenges it may bring, and for whatever it has taken from me…. Multiple Sclerosis has made a better person of me. I have a strong passion to console others who suffer from neurological disease, and hope to reach out to ones from all walks of life who could benefit from my support. Philanthropic work has become a rich, passion of mine. Everyone has a choice to how they react in negative situations. In my case I believe I have become a more compassionate and patient person. I have learned to articulate more clearly to my family and friends what they mean to me. I am a more comforting mother to my children. I love more deeply and appreciate all there is in my life.

Through all of this open communication between patient/physician continues to be central. In medicine there are numerous ways a physician can save a patient. Treating the patient with effective therapy and sharing their knowledge is extremely important. Equally important is the physician who can look beyond inconclusive test results, believe in the patient, understand and connect with their fear and display hope and compassion. This reinforcement offers a healing that medicine simply cannot compare.