FASCINATING, HORRIBLE & LUCKY
I've had ME for over a decade. Two years ago, I was diagnosed with a severe and rare form of Parkinson's. A year later, it was discovered that I had been misdiagnosed. Many neurologists, frighteningly, know very little about ME though it is a brain disease. I'd love to share my story with you to provide further insight, discussion and hope. Below is my story (so far).
It was a good night, a warm night. I felt well enough to go out amongst the living. I was excited to be with friends, crowds, waiters, lights, people, life. If you have ME or are close to someone that does, you know what I mean. I brushed my hair, taking breaks to conserve energy. I was sick and I was tired again but this day was markedly better than the last few weeks. This day, for no known reason, I felt marginally better, maybe almost normal. As a result of my illness, I’d become unreliable. For the most part, I stopped making plans. I had cancelled on so many friends so many times and, consequently, relationships had perished--not due to a lack of consideration, but because I had become an afterthought. It happens.
About a decade ago, I was diagnosed with Myalgic Encephalomyelitis (ME) in Latin it means: myalgic-muscle pain and encephalomyelitis-inflammation of the brain and spinal cord. It is also known, inaccurately, as Chronic Fatigue Syndrome. ME is far more complex and multi-symptomatic than simply feeling tired all the time. ME rendered my life, as I had known it, unrecognizable.
Prior to my ME diagnosis, I had been teaching part time at a local elementary school, enjoying time with my husband and young daughter, running, playing tennis and going out with friends. Then, at age 42, I was diagnosed with mononucleosis (mono). Since that time nothing has ever been the same. The mono never passed. When I hesitatingly asked for a leave of absence, my principal looked over her glasses and assessed, “you don’t look sick to me.” I was to encounter comments like this often. I had an invisible illness.
Lately, there’s been a lot of research into the relationship between Long COVID and ME. Obviously, I’m not happy for the people suffering from Long COVID but I am happy that ME, a rapacious, insidious disease of the brain, is finally garnering some long overdue attention.
My symptoms shapeshifted and multiplied. They included/include: viral breakouts in the forms of a herpetic lesions, vitiligo (whitening of the skin), overwhelming physical and mental fatigue, keratoconjunctivitis sicca (dry eyes), inflammation of my face, atrial fibrillation, sore throat, intense flu-like symptoms yet never a fever, vertigo, unrelenting back and neck pain, sensitivity to temperature extremes, unrefreshing sleep, tinnitus, skin rashes, migraines, IBS-C and tremor. This disease didn’t bring me to my knees. It brought me to my ass. I hired babysitters for my daughter and subscribed to a dog walking service. I scrutinized abstracts and conclusions on PubMed and joined online support groups in search of answers.
I saw doctors---so many doctors. I was turned away at a concierge practice in my hometown of Richmond, VA. The doctor unapologetically informed me that “they” didn’t handle this type of thing. This type of thing? Yes, I fabricated diseases, hypochondriasis, malingering. I cried in my car after that appointment. It was a cold February day and I cried for too long, humiliated and hopeless. Next, I saw an infectious disease doctor. He said he could do nothing for me. I was fired by a functional medicine doctor for reasons still unknown, I was dismissed by an autoimmune specialist. But I pressed on because I wasn’t living. I had become inert, a nobody, a nothing.
I changed my diet. I had always eaten vegetarian for personal reasons but research touted bone broth, so I held my nose and drank it. I could write an article just about dietary suggestions and their outcomes. I did end up going gluten-free. That has helped, not cured, but helped.
After about a year, the acute phase of my illness eventually passed. And then it returned. I went to Mount Sinai, Duke and Stanford (twice). I learned much about my illness. It never goes away. I have the remittent type, meaning it comes and goes. I learned that it was real. I had reached a point where I no longer wanted to live. Not only did I feel like I was dying, but some (a few friends, some family and many doctors) were vocal in their denial of the very existence of my illness. That judgment tortured me. Fortunately, I’ve had the support of my husband through this entire journey, and he has steadily been my number one advocate. He’s helped me monitor my energy levels and reminds me to slow down, as I tend to move quickly and love adventure!
Living with ME, I was accustomed to strange symptoms popping up with no perceptible explanation. The latest had been a tremor. With the help of Google, I diagnosed myself with restless leg syndrome. To confirm, I booked an appointment with a neurologist assuming I would walk away with a prescription to be taken as needed. Instead, I was asked a few questions and performed a few seemingly mundane tasks and within about 15 minutes, the neurologist concluded that I had a rare type of Parkinson’s called Multiple System Atrophy (MSA).
The doctor delivered the news with a disturbing lack of empathy and advised me to “hold on.” According to the doctor, I had about 3 to 5 years to live. She recommended that I, “get my affairs in order.” During my next doctor’s appointment, I excitedly shared with her that I was going to get a stem cell transplant in Chicago and that I’d purchased a hyperbaric chamber. I was not giving up! She told me I needed to manage my expectations.
I got a second opinion. The next doctor, with a degree of levity, explained that I had “regular” Parkinson’s—not MSA.
My husband and I made an appointment with an attorney. I joined groups for support. I was confused, lost and terrified. I joined the Parkinson’s boxing class nearby. Hitting a bag helped! I was the youngest by far, which I didn’t mind and noticed that I didn’t shake quite like the others. So, maybe it was MSA. My shaking became markedly worse after drinking coffee but coffee had been literally prescribed to me at Duke to combat the fatigue.
Within a few weeks of the class, I had a major ME relapse and missed my new friends at boxing. My online Parkinson’s group admonished me (in a nice way) for taking a break from exercising. They didn’t understand my fatigue. I was reminded that I NEEDED to exercise to manage Parkinson’s symptoms, yet over-exertion is the worst thing that you can do with ME, so much so, that some have considered labeling it Systematic Exertional Intolerance Disease (another radical oversimplification). I had worked hard throughout the last decade to “listen to my body.” Prior to ME, I had been a triathlete and a ran seven-minute miles. Exercise was my life. Endurance and tenacity were the best parts of my tennis game.
With ME, that had to change. I began walking interspersed with slow jogging just to feel the wind in my hair. The learning curve often ended with me pushing a fraction too hard and ended with me sick in bed. Singles tennis became doubles tennis. ME held dominion over me, transfiguring me, without my permission, from type A to type B.
After the Parkinson’s (or MSA) diagnosis, bereft and enduring an ME relapse, the tremor worsened. One time, while walking the dog, I fell. I sideswiped another car and readied myself for the conversation about taking my license away. Applying make-up resulted in me wiping it off and not starting over. Snaps, buttons, zippers and bras mocked me. My husband tied my shoes and we cried. My daughter, a junior in high school, had trouble even conceiving of such an advanced loss. She was not only going to lose her mother soon, but she was going to watch it happen. My Parkinson’s/MSA symptoms, including difficulty swallowing and shaking, were not tempered at all by the highest dose of carbidopa levodopa. In a desperate attempt to connect, help, be helped, inform or maybe educate, I created a VLOG on YouTube.
Third opinion: Johns Hopkins. My appointment was three months out but it was to be with the head of the movement disorder clinic at one of the most distinguished hospitals in the world. I would wait.
Three long months later, my husband and I headed to Bethesda, MD. After a two-and-a-half-hour clinical evaluation, the doctor avouched, “I’m not seeing it; I just don’t see any type of type of Parkinson’s or MSA at all.” He told me about a relatively new test, a biopsy that looked for alpha-synuclein proteins. This test, the Syn-One Test, was apparently over 95% accurate in determining a diagnosis of MSA or Parkinson’s.
We returned home to Richmond to wait for the results over Christmas and New Year’s. Two days before Christmas, I was walking the dog around the partially frozen lake. I heard a ping. It was message from the lab containing strange pictures of cells, membranes, greater and less than symbols and the word: NEGATIVE. Negative what? This was not the time to presume. I messaged the doctor and within minutes he messaged back. Apparently, I had seen the results before he had. He looked and assured me that I did not have any type of Parkinson’s disease.
Apparently, one of my medications was known to create false positives on the DaTscan. Did the other doctors review the list of current medications in my chart? I’ll likely never know.
I took the VLOG down. As overjoyed as I was, I couldn’t help but feel like I was in some parallel universe. What had just happened? Parkinson’s symptoms had been present, right? As elated as I was, I was embarrassed to a degree too. I’d always believed in a mind-body connection but refrained from the terminology to avoid blaming the victim. Of course, I believed in the power of positive (or negative) thinking but I did not believe that every person with cancer or other terminal illnesses was failing in their ability to think positively. We are human after all, immortal, things happen. This was different. I felt like a case study of the power of suggestion. I was told that I was going to die and I acted like I was going to die. I developed symptoms. My handwriting shrank and my hands shook. This (unconscious) power is both terrifying and a relief.
I wonder if this has happened to anyone else. I still wonder if MSA lingers in me and to what extent ME and other autoimmune diseases are related to Parkinson’s/MSA. Low dopamine has been indicated in ME. I am fascinated by the power of the mind. The mind/body connection is mysterious, complex and one of the great unknowns. Quantifying and objectifying endless variables feel inconceivable. I do have some power some of the time, for sure. Likely, there is an untapped resource. For me, for now, it’s the awareness, effort and integration of connections that is a life’s work. I am grateful beyond measure yet can’t deny that I live with a lingering paranoia every time I miss a step or have my second cup of coffee.
I've had ME for over a decade. Two years ago, I was diagnosed with a severe and rare form of Parkinson's. A year later, it was discovered that I had been misdiagnosed. Many neurologists, frighteningly, know very little about ME though it is a brain disease. I'd love to share my story with you to provide further insight, discussion and hope. Below is my story (so far).
It was a good night, a warm night. I felt well enough to go out amongst the living. I was excited to be with friends, crowds, waiters, lights, people, life. If you have ME or are close to someone that does, you know what I mean. I brushed my hair, taking breaks to conserve energy. I was sick and I was tired again but this day was markedly better than the last few weeks. This day, for no known reason, I felt marginally better, maybe almost normal. As a result of my illness, I’d become unreliable. For the most part, I stopped making plans. I had cancelled on so many friends so many times and, consequently, relationships had perished--not due to a lack of consideration, but because I had become an afterthought. It happens.
About a decade ago, I was diagnosed with Myalgic Encephalomyelitis (ME) in Latin it means: myalgic-muscle pain and encephalomyelitis-inflammation of the brain and spinal cord. It is also known, inaccurately, as Chronic Fatigue Syndrome. ME is far more complex and multi-symptomatic than simply feeling tired all the time. ME rendered my life, as I had known it, unrecognizable.
Prior to my ME diagnosis, I had been teaching part time at a local elementary school, enjoying time with my husband and young daughter, running, playing tennis and going out with friends. Then, at age 42, I was diagnosed with mononucleosis (mono). Since that time nothing has ever been the same. The mono never passed. When I hesitatingly asked for a leave of absence, my principal looked over her glasses and assessed, “you don’t look sick to me.” I was to encounter comments like this often. I had an invisible illness.
Lately, there’s been a lot of research into the relationship between Long COVID and ME. Obviously, I’m not happy for the people suffering from Long COVID but I am happy that ME, a rapacious, insidious disease of the brain, is finally garnering some long overdue attention.
My symptoms shapeshifted and multiplied. They included/include: viral breakouts in the forms of a herpetic lesions, vitiligo (whitening of the skin), overwhelming physical and mental fatigue, keratoconjunctivitis sicca (dry eyes), inflammation of my face, atrial fibrillation, sore throat, intense flu-like symptoms yet never a fever, vertigo, unrelenting back and neck pain, sensitivity to temperature extremes, unrefreshing sleep, tinnitus, skin rashes, migraines, IBS-C and tremor. This disease didn’t bring me to my knees. It brought me to my ass. I hired babysitters for my daughter and subscribed to a dog walking service. I scrutinized abstracts and conclusions on PubMed and joined online support groups in search of answers.
I saw doctors---so many doctors. I was turned away at a concierge practice in my hometown of Richmond, VA. The doctor unapologetically informed me that “they” didn’t handle this type of thing. This type of thing? Yes, I fabricated diseases, hypochondriasis, malingering. I cried in my car after that appointment. It was a cold February day and I cried for too long, humiliated and hopeless. Next, I saw an infectious disease doctor. He said he could do nothing for me. I was fired by a functional medicine doctor for reasons still unknown, I was dismissed by an autoimmune specialist. But I pressed on because I wasn’t living. I had become inert, a nobody, a nothing.
I changed my diet. I had always eaten vegetarian for personal reasons but research touted bone broth, so I held my nose and drank it. I could write an article just about dietary suggestions and their outcomes. I did end up going gluten-free. That has helped, not cured, but helped.
After about a year, the acute phase of my illness eventually passed. And then it returned. I went to Mount Sinai, Duke and Stanford (twice). I learned much about my illness. It never goes away. I have the remittent type, meaning it comes and goes. I learned that it was real. I had reached a point where I no longer wanted to live. Not only did I feel like I was dying, but some (a few friends, some family and many doctors) were vocal in their denial of the very existence of my illness. That judgment tortured me. Fortunately, I’ve had the support of my husband through this entire journey, and he has steadily been my number one advocate. He’s helped me monitor my energy levels and reminds me to slow down, as I tend to move quickly and love adventure!
Living with ME, I was accustomed to strange symptoms popping up with no perceptible explanation. The latest had been a tremor. With the help of Google, I diagnosed myself with restless leg syndrome. To confirm, I booked an appointment with a neurologist assuming I would walk away with a prescription to be taken as needed. Instead, I was asked a few questions and performed a few seemingly mundane tasks and within about 15 minutes, the neurologist concluded that I had a rare type of Parkinson’s called Multiple System Atrophy (MSA).
The doctor delivered the news with a disturbing lack of empathy and advised me to “hold on.” According to the doctor, I had about 3 to 5 years to live. She recommended that I, “get my affairs in order.” During my next doctor’s appointment, I excitedly shared with her that I was going to get a stem cell transplant in Chicago and that I’d purchased a hyperbaric chamber. I was not giving up! She told me I needed to manage my expectations.
I got a second opinion. The next doctor, with a degree of levity, explained that I had “regular” Parkinson’s—not MSA.
My husband and I made an appointment with an attorney. I joined groups for support. I was confused, lost and terrified. I joined the Parkinson’s boxing class nearby. Hitting a bag helped! I was the youngest by far, which I didn’t mind and noticed that I didn’t shake quite like the others. So, maybe it was MSA. My shaking became markedly worse after drinking coffee but coffee had been literally prescribed to me at Duke to combat the fatigue.
Within a few weeks of the class, I had a major ME relapse and missed my new friends at boxing. My online Parkinson’s group admonished me (in a nice way) for taking a break from exercising. They didn’t understand my fatigue. I was reminded that I NEEDED to exercise to manage Parkinson’s symptoms, yet over-exertion is the worst thing that you can do with ME, so much so, that some have considered labeling it Systematic Exertional Intolerance Disease (another radical oversimplification). I had worked hard throughout the last decade to “listen to my body.” Prior to ME, I had been a triathlete and a ran seven-minute miles. Exercise was my life. Endurance and tenacity were the best parts of my tennis game.
With ME, that had to change. I began walking interspersed with slow jogging just to feel the wind in my hair. The learning curve often ended with me pushing a fraction too hard and ended with me sick in bed. Singles tennis became doubles tennis. ME held dominion over me, transfiguring me, without my permission, from type A to type B.
After the Parkinson’s (or MSA) diagnosis, bereft and enduring an ME relapse, the tremor worsened. One time, while walking the dog, I fell. I sideswiped another car and readied myself for the conversation about taking my license away. Applying make-up resulted in me wiping it off and not starting over. Snaps, buttons, zippers and bras mocked me. My husband tied my shoes and we cried. My daughter, a junior in high school, had trouble even conceiving of such an advanced loss. She was not only going to lose her mother soon, but she was going to watch it happen. My Parkinson’s/MSA symptoms, including difficulty swallowing and shaking, were not tempered at all by the highest dose of carbidopa levodopa. In a desperate attempt to connect, help, be helped, inform or maybe educate, I created a VLOG on YouTube.
Third opinion: Johns Hopkins. My appointment was three months out but it was to be with the head of the movement disorder clinic at one of the most distinguished hospitals in the world. I would wait.
Three long months later, my husband and I headed to Bethesda, MD. After a two-and-a-half-hour clinical evaluation, the doctor avouched, “I’m not seeing it; I just don’t see any type of type of Parkinson’s or MSA at all.” He told me about a relatively new test, a biopsy that looked for alpha-synuclein proteins. This test, the Syn-One Test, was apparently over 95% accurate in determining a diagnosis of MSA or Parkinson’s.
We returned home to Richmond to wait for the results over Christmas and New Year’s. Two days before Christmas, I was walking the dog around the partially frozen lake. I heard a ping. It was message from the lab containing strange pictures of cells, membranes, greater and less than symbols and the word: NEGATIVE. Negative what? This was not the time to presume. I messaged the doctor and within minutes he messaged back. Apparently, I had seen the results before he had. He looked and assured me that I did not have any type of Parkinson’s disease.
Apparently, one of my medications was known to create false positives on the DaTscan. Did the other doctors review the list of current medications in my chart? I’ll likely never know.
I took the VLOG down. As overjoyed as I was, I couldn’t help but feel like I was in some parallel universe. What had just happened? Parkinson’s symptoms had been present, right? As elated as I was, I was embarrassed to a degree too. I’d always believed in a mind-body connection but refrained from the terminology to avoid blaming the victim. Of course, I believed in the power of positive (or negative) thinking but I did not believe that every person with cancer or other terminal illnesses was failing in their ability to think positively. We are human after all, immortal, things happen. This was different. I felt like a case study of the power of suggestion. I was told that I was going to die and I acted like I was going to die. I developed symptoms. My handwriting shrank and my hands shook. This (unconscious) power is both terrifying and a relief.
I wonder if this has happened to anyone else. I still wonder if MSA lingers in me and to what extent ME and other autoimmune diseases are related to Parkinson’s/MSA. Low dopamine has been indicated in ME. I am fascinated by the power of the mind. The mind/body connection is mysterious, complex and one of the great unknowns. Quantifying and objectifying endless variables feel inconceivable. I do have some power some of the time, for sure. Likely, there is an untapped resource. For me, for now, it’s the awareness, effort and integration of connections that is a life’s work. I am grateful beyond measure yet can’t deny that I live with a lingering paranoia every time I miss a step or have my second cup of coffee.