خرید و دانلود نسخه کامل کتاب When the Diagnosis Is Multiple Sclerosis: Help, Hope, and Insights from an Affected Physician – Original PDF

There are countless different symptoms of multiple sclerosis. Therefore, no two individuals will have exactly the same physical or emotional experiences. I share the account of my own diagnosis because hearing the stories of others’ diagnoses was so helpful to me when I was newly diagnosed. Listening to others’ stories made me feel as if maybe I could actually survive as a member of this club. Again, not a club that I would have chosen to sign up for, but a club that is full of understanding and support. The stories of others comforted me and made me feel less alone. I share with you my entire diagnosis story, although somewhat long, because this is frequently the reality of being diagnosed with MS. It was six years from the time that my first symptoms appeared until I knew with certainty that I had MS. I was twenty-seven years old, engaged to be married, and working long hours as a resident physician when I began to experience pain in my left eye. It felt as though I had pulled a muscle in my eye, but as a physician, I knew that was unlikely. I assumed the pain would be gone in a few days. Instead, the pain increased. I began to have difficulty driving because of the pain brought on by looking to the extreme left or right. I decided to call a resident physician whom I knew in the Department of Ophthalmology, and he suggested that I be evaluated in clinic sometime that week. Two days later, I went for my appointment, where a different resident physician asked a lot of excellent questions and did a thorough eye exam. He could not see anything wrong with my eye but recommended “monitoring” the symptoms so that I could let him know if anything changed or got worse. As is the case for so many patients in the early stages of MS before a diagnosis has been made, I left the appointment feeling somewhat foolish. I felt that I had wasted my own limited time as well as the time of the resident ophthalmologist. I attributed my symptoms to the stress of a busy inpatient rotation where I was caring for cancer patients in addition to the stress of preparing for a wedding. I left the office and returned to the hospital to tend to my patients who were truly sick as they battled various cancers. I again dismissed the eye pain since I now knew there was “nothing wrong.” A few days later, I was shopping for bridesmaid dresses when I began to sense that something was not quite right with my vision. I stopped in the middle of the store, looked straight ahead, and realized that I could not see the left side of the room. My stomach turned, and panic slowly set in. Now I was scared. While I still did not have a definite diagnosis in mind, I knew something had to be very wrong. The resident physician a few days earlier Being Diagnosed 3 had asked, “Are you sure there are no changes or problems with your vision?” Well now there were problems. The thought of potentially losing my vision altogether nearly paralyzed me. I paged the resident physician whom I had seen in the office, and I described my partial visual loss on the left, trying to sound calm and professional. His tone was now quite serious. Gone was his easy-going demeanor of a few days prior. He would see me with his supervising physician first thing in the morning. His level of concern only escalated my own fear. I did not ask him what he thought was wrong, and he, of course, was not going to tell me anything over the phone. At that point in my Internal Medicine training, I had never seen a patient with optic neuritis, the diagnosis I was soon to have. Therefore, I certainly did not know that optic neuritis can be an initial symptom of MS. So while I had trouble falling asleep the night before that appointment, I still did not know what was coming. The next morning, within minutes of examining my eyes and hearing my symptoms, the supervising neuro-ophthalmologist sat down with me and told me I had “optic neuritis.” In a manner that was much too straightforward for me as I was suddenly transforming from physician to patient, he told me that optic neuritis could be associated with multiple sclerosis. However, he went on, there were many instances when it occurred without having MS. I learned that I would need an MRI scan of my brain to visualize my optic nerves and to see if there was any indication of MS. As for my visual symptoms, I would probably recover most of my visual function. Oh, and if the MRI confirmed the optic neuritis, I would need to receive three days of high-dose intravenous steroids, starting as soon as possible, to help with my visual symptoms and perhaps to prevent the future onset of multiple sclerosis. I choked back the tears with my stomach in knots as I tried to maintain my composure as the professional physician that I thought I was supposed to be. We were still sitting in the relative darkness of the eye examination room as the supervising physician provided this onslaught of information for me. To this day, what I remember most about that morning was that it all felt very dark. The hours that followed that appointment are somewhat of a blur. I know that I called my fianc ́e first to tell him. He also did not know much about optic neuritis, so his initial response was very calm and supportive. I then had to arrange for coverage at work so that I could get my MRI done and begin receiving intravenous steroids. That night, my fianc ́e and I sat at my kitchen table, flipping through the pages of a medical textbook, trying to educate ourselves about this diagnosis of optic neuritis. Reading together, we came to the page where it said between 30 and 70 percent of patients with optic neuritis would go on to develop multiple sclerosis. All the strength that I had been mustering up was gone. “30 to 70 percent.” Multiple sclerosis might truly be in my future. I started to weep. My fianc ́e held me and wept with me. The MRI was done within twenty-four hours, and there was wonderful news to be had. The scan did not show any definite signs of MS. However, both the 4 When the Diagnosis Is Multiple Sclerosis left and right optic nerves were involved, even though I only had symptoms on the left side. The following morning, instead of putting on my white doctor’s coat, I found myself feeling like a foreigner in uncertain territory as I lay on a stretcher in a hospital gown, having an IV catheter poked into my arm. Once the IV was in place, explanations followed from a nurse about what to expect as the steroids were infusing—perhaps a metallic taste in my mouth, perhaps some heat and flushing. My fianc ́e by my side and holding my hand, I was glad to be doing the right thing for my health. The tears of forty-eight hours earlier were gone, and I was back in my “pull-it-together Kym” mindset. Denial had already begun to settle in as I protected myself from my worst fears. My MRI showed no signs of multiple sclerosis. I did not have MS, and I was not planning on getting it. The optic neuritis had just managed to sneak in during a stressful time of my life. Thirteen years later, as I look back to my episode of optic neuritis, perhaps I was fortunate in that it gave me a chance to contemplate the possibility of having MS without having to receive the actual diagnosis. Unlike the experience of many other MS patients, I was also fortunate in that it was only days from my initial eye symptoms until I had some definite diagnosis. I did not have to endure months or years of different doctors and different symptoms, wondering what was wrong with me or if I was just crazy. For me, my vision recovered nearly completely within weeks of treatment, and life went on. And on it went quite well. I got married, finished my residency training, began working as an Internal Medicine physician and gave birth to a beautiful little girl. I was happy and busy, so I rarely thought about the possibility of MS. A neurologist had once said to me that if I made it five years from my initial optic neuritis diagnosis without any new symptoms, I would probably never have MS. Even though I spent little time thinking about the possibility, I do distinctly remember making a mental note to myself in April 1999 when I was seven months pregnant with my first child, that those five years had passed without any apparent symptoms. One morning, fifteen months after the birth of my daughter, I was super- vising resident physicians in a very busy outpatient clinic. I began to notice that I felt lightheaded whenever I stood up from the discussion table to go to a patient’s room. Within hours, this dizzy sensation had become persistent, and I had to put my head down on the table just to tolerate the sensation. I excused myself from the supervising room and asked a nurse to check my blood pres- sure. My pressure was surprisingly low and my heart rate was abnormally fast. I began to think of all the things that could be causing my symptoms—blood loss, dehydration, a thyroid problem, perhaps a second pregnancy. However, I had no reason to have any of those problems and had not yet made the decision to have a second child. Despite having had optic neuritis six years earlier, the diagnosis of multiple sclerosis did not even cross my mind that day. Denial can be surprisingly strong. Being a physician admittedly allows for rapid access to other physicians. Within three days, I had seen a neurologist and a cardiologist. Both of these Being Diagnosed 5 very intelligent doctors thought I had a form of “postural orthostatic hypoten- sion” that can sometimes be seen in young women without a definite cause. The neurologist did not think I needed to worry about MS, and an MRI was not ordered. Two nights later, I got up to use the bathroom at three o’clock in the morning. On my way back to bed, I was struck by profound dizziness and spinning. I fell to the floor. It felt as though the floor were a magnet, pulling my head back down and preventing me from getting back up. I called my husband’s name. His strong arms carried me back to bed, where everything in the room continued to spin even though I was lying perfectly still. Did I have a brain tumor, was I bleeding inside my head? Although terrified, I still did not realize that a diagnosis of multiple sclerosis was twenty-four hours away. Needless to say, this spinning episode greatly concerned the neurologist I had seen a few days prior. That evening, I found myself back inside the tight space of the MRI machine. With my head wedged tightly between foam blocks and cage-like bars inches from my nose, I thought of my daughter sleeping soundly in her crib at home. If this were to be MS, would I be her soccer coach someday, would I walk down the aisle at her wedding? A hot tear trickled from the outer corner of my eye, flowing down my cheek and onto my neck. The loud, clanking sounds of the MRI scanner continued. I prayed as my heart raced. I tried to see my own patients in the office the following day to keep my mind off the fact that I was anxiously awaiting the results of the MRI scan. The day slowly crept by, and at 4:30 P.M. , I still had not received a call from the neurologist. My husband and I could not wait any longer. As I went in to see my last patient, my husband went over to the radiology department to find the results. I had just stepped out of my patient’s room to get some information sheets when he returned. The look on his face told me the news, but I still had to hear the words from him to be sure. Yes, it was MS. Queasiness filled my stomach as I felt the walls closing in. Somehow, I kept my composure long enough to return to my patient’s room to give her the necessary papers and answer a few more questions. My husband was waiting for me as I came out. We grabbed our coats and walked in silence ever so quickly to our car, as if we were trying to escape an evil that was chasing us. As soon as we were both inside the car and I slammed the door shut, the sobs came uncontrollably in a way I had never experienced before. My husband held my shaking body.