Although only a resident, I knew enough about neurologic anatomy and physiology that numbness on only one side or part of the body, that persisted, without neck pain, was usually never a good thing. Later that evening I not only continued to have arm numbness, but also experienced urinary frequency, more indicative of a spinal cord lesion. I was a very low stroke risk so that was never really ever a consideration in my self-diagnosis. That’s the thing about physicians…we make the absolute worst patients. We just know too much. For the remainder of the trip, I was consumed with fear for my health, my future. I was barely into the first year of my medical residency.
After eight years of being rejected admission into medical school, I was finally accepted, graduated first in my class, and landed one of the most competitive surgical residencies in the country. I transitioned to medicine, and accepted a spot in Savannah, GA., four hours from where I grew up in Atlanta. I moved into a nice apartment along the intercoastal marshlands of Savannah. I was there for three months when I developed a severe shingles infection along my left flank. This was approximately 3-4 weeks before my trip to New York. Shingles is caused by the varicella zoster virus, an enterovirus in the herpes family. It lives dormant in nerve cells and appears as an active infection during times of stress or immunodeficiency, both of which are rare in an otherwise young, healthy male. Well, stress maybe not so rare, especially during residency, but not an immune deficiency. Other than the pain of the lesions on my torso, I felt in my normal state of health. It wasn’t until the New York trip and the beginning of the neurological symptoms that everything went crazy.
When I returned to Savannah from New York, I underwent a battery of tests, including MRIs of the brain and spinal cord, along with a spinal tap. A demyelinating, or inflammatory lesion was found at the C3 level in my spinal cord, most certainly causing my left arm numbness, and inflammatory cells present in my cerebral spinal fluid, both findings leaning towards a diagnosis of Multiple Sclerosis. This was a devastating possible diagnosis for anyone, especially someone so active and into health and fitness, just beginning their career, a career based on taking care of these disorders. I had dedicated my life to taking care of patients, now, potentially, I would be disabled in the prime of my career.
About 3 months later, the numbness subsided and the repeat MRI confirmed that the lesion had resolved. By this point, I had moved into a different apartment because I just didn’t feel right there. By this time, most of my symptoms were symmetrical, peripheral neuropathy, fatigue, brain fog, dermatological manifestations, increase food allergies, especially gluten, accompanied with gastrointestinal symptoms, mainly diarrhea and weight loss. Vivid in my memory upon moving into another apartment was the sight of water pouring through the ceiling the day I moved out. This was a sign, I believe, presented to me to help me figure out what was going on with me and why my body, and more concerning, my mind, were failing me.
Because my neurologic symptoms were symmetrical and more systemic with brain fog, clinically called encephalopathy, my neurologist in Savannah was stumped. You see, with MS, you acquire lesions in the brain and spinal cord only, in different locations, at different times. This is how the diagnosis is made. My nerve dysfunction was in both of my feet and legs equally, called stocking-glove distribution. For this to happen in the central nervous system (ie the brain and spinal cord), one would have to have 2 separate lesions on both sides of the brain at the same time. Just doesn’t happen that way. Even a lesion that cuts across the spinal cord rarely ever produces symmetrical symptoms. Peripheral neuropathy, normally seen in diabetes and B12 deficiency and encephalopathy mainly seen in metabolic or infectious disorders are systemic, or whole body, illnesses. For this reason, he sent me to the Mayo Clinic, known for its enthusiasm into strange, interesting cases. You never want to be an interesting case.
At The Mayo Clinic, I spent over 2 hours with one of the leading MS specialists in the country. Although she was impressed with the initial MRI and spinal tap results, she was perplexed by how my symptoms had morphed and manifested, now pointing away from a diagnosis of MS. She was convinced that all of my neurologic symptoms were related to the shingles infection I had just recovered from. My question for her was why did I get the infection in the first place? In Medicine, there are no coincidences. I always tell my otherwise healthy patients that have interesting cases that if I hear hoofs pounding the ground, I don’t think of a bunch of zebras…I think of one big horse. In other words, all of your symptoms aren’t from a bunch of different rare conditions but can be pinned on one cause or condition. She sent me back to Savannah with the plan of waiting and watching, and how I progressed or regressed, not very reassuring.
I was now into my second year of residency. I was brought into a meeting with my Program Director and Chief of the Medicine Department. They were placing me on academic probation. If I didn’t meet and exceed the bullet point expectations, I would lose my residency spot and my career would be over. I couldn’t think clearly when I felt sick and it became evident in my performance. I had to take a full Neuropsychiatric exam before I returned to work. The results did show cognitive slowing but not enough to exclude me from my duties. I found the strength to complete my residency, still feeling sick, everyday, some days worse than others.
My first job as an Attending Physcian took me to Austin, Texas. During my 3 years in Austin, I began to feel a little better, but not near how I felt before I became sick. I did continue to get systemic viral infections and neurologic symptoms off and on, but did see some improvement with dietary changes, supplements, magnet therapy, meditation, and continuing my exercise regimen.
When I began the job in Houston, my symptoms came back stronger than ever, but only during certain times of the day, depending on my rounds. I am methodical and a creature of habit when it comes to rounding on my patients. I always start from the top floors and work down, the more remote locations first, unless there is a sick patient that needs to be seen right away. The most remote building at my new hospital was where I started every morning, 7am. I was sick every day, forgetting my password to the computer system, becoming confused with my words speaking with colleagues, going to the wrong room or even the wrong floor. One day I had a very sick patient that needed my immediate attention so I started in an entirely different building. I felt great all day, until I walked into the building I normally started my rounds. Fifteen to twenty minutes after I entered that building, my symptoms returned and would abate hours after I left the hospital. There are no coincidences, remember?
What happened to me in Savannah? Well, very long story shortened considerably…I was genetically predisposed not to deal with the mycotoxins secreted from mold that are present in water damaged buildings very well. After prolonged exposure, my immune system not only became overwhelmed, making me vulnerable to infection, primarily viral, but it also became confused and was unable to differentiate between harmful invaders and my own cells, primarily neurologic cells and tissue, a phenomenon known as molecular mimicry.
The thing about traditional medicine is that we are pretty good at treating acute illness. If you get cholecystitis, we take your gallbladder out. If your son gets sick from bacterial meningitis during his first semester at college, we treat and cure him with antibiotics. If your grandmother falls and breaks her hip, we surgically stabilize it with an open reduction and internal fixation. If you dad suddenly develops chest pain and has a heart attack, we can access the coronary vessel with a catheter and deploy a stent to re-establish blood flow to the heart. When it comes to chronic diseases, diseases or disease states that persist for months or years, we have little to offer. Chronic heart failure can be treated with medications that may improve the pumping capacity of the heart slightly, but really we are just treating the symptoms, primarily volume overload and swelling with diuretics. For chronic neurologic conditions such as MS, we offer high dose steroids for exacerbations, and biologics, or disease modifying compounds, usually engineered antibodies against some of the inflammatory agents active in the disease. The side effects of some of these biologics are worse than the disease itself. Chronic Hepatitis C infection, often leading to cirrhosis and liver failure or liver cancer, can only be treated with a new liver. Don’t even get me started on the whole Lyme disease issue. Unless you see a physician in the Northeast, specifically within a few hundred mile radius around Lyme, Connecticut, where the first case of Lyme was documented, you will be hard pressed to find one that won’t completely dismiss your claim, much less, even believe that you were ever infected with the tick born bacteria at all. You see, as physicians, we don’t like failure, starting from missing a question on a test in your first year in medical school to missing a diagnosis in the twilight of our careers. The only thing worse in our eyes, is not being able to help someone that seeks our help.
In the first few months of my illness, I saw a number of specialists, some of the brightest minds in the country, in their respective fields. My diagnoses consisted of, but was not limited to, probable MS, fibromyalgia, depression, chronic EBV infection, and autoimmune encephalitis. That’s a lot of zebras for an otherwise healthy young person. Through it all, I knew that there was one big old horse responsible for everything I was going through. I was armed with the distinct advantage, over most patients, of being a medical doctor and possessing the knowledge that allowed me not to just accept diagnoses that didn’t fit. This is the reason I wanted to share my story. There was no one more skeptical than me in regards to patients with chronic disease. I would cringe when I cared for a patient complaining of chronic issues, not because I didn’t believe their story, but because I couldn’t tell them what was wrong or offer anything to help them. My experience with a mysterious, chronic illness almost ended my career. But in the end, it has made me a better doctor. I certainly don’t have all the answers, and would never suggest that what might be happening to you is the same thing that happened to me. But if the symptoms don’t make sense, never accept answers that don’t, and always question everything.
Remember, there are no coincidences in medicine. So, if you move into a building with water pouring through the ceiling and you get sick sometime thereafter, chances are you don’t have five different diseases all of a sudden. When was the last time you saw a zebra in real life? Maybe at the zoo? Or was that the Neurologist’s office at The Mayo Clinic?