My name is Christoff Truter, and I’m a software developer from South Africa, not a doctor (my only patients are misbehaving lines of code). Even though I’m a layman when it comes to medical matters, my wife’s steady health decline over the past seven years forced me into research mode.

I’ve spent countless hours studying medical journals, textbooks, and clinical resources as we were passed from specialist to specialist to make sense of my wife's deteriorating health. Because of this journey, I believe the insights I’ve gained deserve thoughtful consideration rather than dismissal simply because I’m not a clinician; otherwise, meaningful dialogue becomes impossible. It is important to be part of the conversation and to become medically literate.

Initially, she was diagnosed with a functional gastroenterological disorder (IBS). At one point, she was so severely bloated that she was accidentally pushed in a wheelchair to the prenatal ward, despite not being pregnant. A year later, she was diagnosed with endometriosis, for which she later underwent laparoscopy to remove nodules. The condition (correlation assumed) eventually escalated into a neurological condition possibly linked to the so-called gut-brain axis (third endocrine axis?).

Multiple Sclerosis (MS) was initially suspected, and some abnormalities were found on MRI scans of the brain and spine, along with cervical stenosis (which neurosurgeons ruled benign); however, after numerous consults, lumbar punctures, and blood tests, it was concluded that although the symptoms closely resembled MS, the condition did not meet the current McDonald criteria.

Instead of further investigation, the neurologist at the time diagnosed my wife with Functional Neurological Disorder (FND), provided a list of websites to visit, booked appointments with a psychologist and psychiatrist, and as we left, placed a hand on her shoulder, saying she would “think herself better.”

This immediately raised red flags for us. As we researched FND, it became apparent that this diagnosis seems to be speculation rather than certainty. This is a concern I will explore in much broader detail in future posts. Doctors, I believe, have a responsibility to be honest and transparent about the limitations and uncertainty surrounding such diagnoses, especially when presenting at medical conferences and inspiring doctors to jump onto bandwagons, applying their teachings as if they were gospel.

Despite all of this, my incredibly determined wife continues to fight for her life, attending physiotherapy twice a week and undergoing rehabilitation five times weekly to maintain muscle strength. She also takes various medications prescribed by our very sympathetic GP to manage her symptoms; unfortunately, however, her condition continues to deteriorate. 

She continues holding on to her dreams, dreams of one day sprinting the 100m at the Paralympics. Unfortunately, some medical professionals discouraged her from pursuing these goals, which is plainly wrong and borderline criminal advice for someone in her condition.

Meanwhile, I continue to delve deeply into the medical literature, hoping one day to contribute scientifically to improve her condition and that of others like her, particularly by shedding light on underlying conditions that are too often overlooked or misattributed. The irony isn’t lost on me: FND is often described as a 'brain software' problem, and as a software developer, I find myself searching for a ‘brain stack’ to debug.