Pediatrician struggles through diagnosis of her own condition
by Dr. Karen J. Miller, M.D. · Jul 15, 2022
After suffering painful symptoms for over a year, Samaritan member learns not to give up searching for answers
When I started medical school at the University of Virginia in 1987, one of my favorite classes was physical diagnosis. We were given a very complicated patient history and, through reading and research (done before the time of computers, practically the Stone Age!), we would tease apart the facts of the case to solve the mystery. It was one of the classes where I honed my skills to become an exceptional diagnostic physician … or so I thought.
It was all well and good until I became the patient and couldn’t find an answer.
In summer 2019, I had two episodes six weeks apart of the sudden onset of mildly bothersome numbness in both my hands. It came on quickly, ascended my forearms within hours, and then resolved in a few days. Bothersome enough to cause me to take pause, but not enough to see my doctor. Maybe I had exercised too much and something was pressing on nerves in my neck?
Later that summer, I began experiencing a pain that only occurred with intense exercise, like doing planks. The pain was like lightning, starting in my right lower rib cage and spreading like fire in my lower chest, lasting only a minute before dissipating. At the time, I didn’t even think about the earlier symptoms, as they were so disparate. Gradually, however, the pain in my right rib cage became more frequent, even with light exercise like walking or running on a treadmill. But life was busy with planning a wedding for my youngest daughter, and I ignored the symptoms as long as I could until the end of November, when the pain became nearly constant, making it hard for me to do my job as a pediatrician.
At the end of November, this led to my first appointment, a visit to my primary care doctor, who assumed I had a gallbladder issue because of the location of my pain. I was put on Nexium, a medication that decreases the amount of acid produced in the stomach, in case it was something related to that organ and was told to not use any NSAIDs(nonsteroidal anti-inflammatory drugs; Motrin, for instance). I also was sent for my first test: an ultrasound of my abdomen that showed a normal gallbladder.
Losing my mind?
At this point, my symptoms were worsening. The pain had spread to my chest, and I was waking up multiple times at night with night sweats and severe pain in both thighs.
I had lab work, and an abdominal and chest CT—all normal. My primary care doctor wanted me to see a gastrointestinal specialist. This led to a HIDA scan of my gallbladder and an upper endoscopy—all normal.
Was I losing my mind? How could I have such pain but everything be so normal? Interestingly enough, on my first visit to the GI, my blood pressure was 158/88—shocking for someone who normally had systolic blood pressure that never went over 100.
In mid‐January, I decided to simply walk on my treadmill. I developed such intense chest pain, though, that I ended up in the emergency room and was hospitalized overnight when my EKG showed an abnormality and an echocardiogram showed a small amount of fluid around my heart.
The diagnosis was pericarditis. I had my answer!
Only, I didn’t.
I was put on NSAIDs (which at this point I had avoided for several months) and colchicine, which I was supposed to take for three months. Although I felt a little better, I had no exercise tolerance without return of the pain. A repeat echo six weeks after starting medication still showed the fluid. I was switched to Indomethacinas my NSAID. My cardiologist referred me to a rheumatologist who, in mid‐March, told me I simply had “costochondritis” and needed a muscle relaxant. She was dismissive.
By mid‐April, I was in so much pain, I had to stop working. I was short of breath, my blood pressure was 168/98, and I was admitted to the hospital overnight for a lung scan to look for blood clots (a hospital stay in the middle of a pandemic for something not related to COVID-19 is a whole other story!). After a negative study, I was discharged.
New symptoms appear
The next months were a series of new symptoms and no resolution of the fluid around my heart. Just several days after my second hospitalization, I had the sudden onset of intense burning in all my fingertips; they were throbbing and red. My primary care doctor, for lack of anything else to try, put me on a steroid taper, which only made me feel worse and caused me to get a weird rash on my face. I was seen by another rheumatologist and then a neurologist. I had MRIs of my head and spine as well as muscle and nerve studies, all of which came back normal. I was told I possibly was developing a neuropathy and was put on gabapentin. The planned skin biopsies that would prove the diagnosis never happened because of COVID-19.
As the dose of gabapentin was increased over weeks to the maximum, my symptoms kept getting worse and more bizarre. Pain shot up my arms like electricity. The bottoms of my feet were numb and at times so cold that not even putting them in hot water could warm them. Ringing in my ears was at times so intense that it would knock me off balance. I was having bizarre gasping hiccups. My tongue and teeth would intermittently become painfully numb. At night, I would have palpitations and such shooting pains across my chest that I felt a sense of impending doom. I truly thought I was dying.
By October 2020, the burning in my hands felt like shards of glass. And suddenly there was a new symptom—I was urinating blood, which also felt like shards of glass coming out of my body. This was similar to my only past health problem: kidney stones. I had had them three times in the past: once while I was in medical school, once in my 30s, and once in my late 40s. Only this time, the ultrasound showed no stone, and I continued to urinate blood for weeks.
Husband finds the answer
All this time—now over a year of my life—my husband, who is a construction cost consultant, was like the student in the physical diagnosis class. He took all my symptoms and researched every one of them. In December, he told me he had the answer—I had oxalatepoisoning.
I thought he was nuts! Who’s ever heard of oxalate poisoning? There is almost nothing in the literature about it. But lo and behold, after learning about oxalates and what foods contain them, I realized I had been poisoning myself most of my life with my favorite foods.
- I ate spinach by the Costco big box and raspberries almost daily (that October I had a bumper crop in my garden and, because we weren’t seeing friends because of COVID, I ate every one of them).
- I ingested almonds daily (I had stopped cow’s milk and replaced it with almond milk in 2013 and, three months later, had a kidney stone).
- I ate potatoes regularly in all forms (also a staple of our garden).
- Dark chocolate was my favorite dessert.
There is not much in the literature about oxalates other than their relationship to kidney stones, but I did find information from a nutritionist and every symptom I had was in her articles, right down to the dinosaur‐sounding hiccups!
The first week of January, I started a low-oxalate diet and, within three days, I could feel the difference! A true miracle! Within a few weeks, I could walk on my treadmill with no chest pain.
It has been a long year, but my symptoms are almost completely resolved, and I am back to work and leading a very healthy life—minus spinach, raspberries (OK, every once in a while I sneak a few), potatoes, almonds, and dark chocolate (if I sneak any of that, I feel terrible for days, so I have truly given it up).
Another miracle is that I had suffered with chronic styes for years and had a crazy regimen daily to try to control them. Once I lowered my oxalate intake, the redness of my inner eyelids and styes resolved. That is nowhere in any medical literature!
Don’t give up!
I have let every doctor I’ve interacted with over the past two years know of my recovery.
And why am I telling you? Because maybe one of you has similar symptoms and this information may be helpful. Or maybe one of you has symptoms that doctors haven’t been able to find the cause for. Don’t give up! Doctors don’t always have all the answers! I am so thankful for my husband (now an honorary doctor in my book) and even more thankful for our heavenly Father who sustained me during this difficult time in my life. My life verse during this illness was 2 Corinthians 4:16‐18:
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
Samaritan Ministries member Dr. Karen J. Miller, M.D., is a pediatrician in Maryland.
The information provided in this article is for educational purposes and is not meant as medical advice. It is the opinion of the writer. The information is not meant to replace a one-on-one relationship with a qualified health professional.