Connecting the Dots

My First Fight

I was barely one when it happened. My parents were not allowed to come near me, so they had to watch me through a window. To make matters worse, I was not a pretty sight to see. Intravenous tubes, administered through the veins in my scalp, served as a lifeline for my frail body. As my life hung in the balance, everyone prayed that I, and not the meningitis, would win the battle. I was barely one when all of this unfolded. No, not "one" as in one year old, I was barely one month old. It was my first fight; sadly, it would not be my last.

Decades after surviving that fight, I learned that up to 50% of babies who have neonatal meningitis may be left with after-effects resulting from damage to various areas of the brain (MeningitisNow); and that more serious cases of meningitis can lead to permanent brain and nerve damage, behavioural changes, cognitive disabilities, lack of muscle control, seizures, and memory loss (National Institute of Neurological Disorders and Stroke). Did my bout with meningitis contribute to the clumsiness, anxiety, nightmares, crying spells, and bedwetting that accompanied me throughout childhood? Did it have any connection to my present fight?

My Present Fight

I didn't know it then, but it appears that my present fight started back in my 20s. My blood tests revealed consistently low levels of Vitamin D and white blood cell count; I suffered from chronic constipation; and I was still plagued by clumsiness, anxiety, nightmares, and crying spells (thankfully, I had shaken off the bedwetting!). At 24, I found out that I had elevated levels of prolactin in my blood. This threatened to shatter my hopes of conceiving children. Thankfully, it failed. Twice.

My 30s, however, ushered in a wave of strange symptoms. This led to many more tests and appointments. Eventually, at 35, clinical assessments and a brain imaging test (DaTscan) confirmed the loss of dopamine transporters in my brain. An unwanted diagnosis promptly followed.

It took well over five years to get diagnosed with Parkinson's disease (PD). Looking back, it seems as though there were enough clues to have reduced that time; the dots just needed to have been plotted and connected.

Connecting the Dots: Symptoms

I started experiencing hand tremors between 2010 and 2011. Over the next three years, the tremors worsened, and more symptoms - muscle weakness, muscle stiffness, weird sensations in my thighs, reduced sense of smell and depression - crept in. In addition to this, I experienced autoimmune reactions to sunscreen under direct sunlight, muscle pain, severe muscle weakness (in the early hours of the morning), and an impaired ability to concentrate. Throughout this time, I saw multiple doctors/specialists and underwent multiple tests, but no one ever even mentioned PD. How could this have been? Granted, a 30+ year old Nigerian female is not your typical PD candidate, but hadn't these symptoms provided sufficient clues to warrant even a discussion on the possibility of PD?

Connecting the Dots: Investigating the Prolactin/Dopamine Relationship

After my diagnosis, I discovered that dopamine (the neurotransmitter lacking in my brain) is responsible for restraining the production of prolactin (ncbi.nim.nih). Could the unrestrained prolactin levels in my blood, 12 years earlier, have been the earliest indication that my dopamine production levels were lower than they should have been? As a layperson, the correlation seems so clear, especially after further tests had ruled out other causes of the elevated prolactin levels. If dopamine restrains prolactin levels, does it not stand to reason that unrestrained prolactin levels could possibly be as a result of reduced dopamine? What am I missing?

The Delicate Art of Diagnostics

Now, I must admit, I know that the intricate web of human diseases and medical intervention is a lot more complex than my narrative may suggest. The objective of this blogpost is not to trivialise the great work being done by the medical and research community to identify ways to diagnose PD earlier and more reliably. The objective is simply to share my experiences, with the hopes of starting a discussion that will positively contribute to the extensive ongoing research in PD diagnostics. To kick off the conversation, I will start with the following questions:

  • How do we ensure that doctors have access to patients' complete medical history? I have lived in four countries (on three continents), and as a result, my medical history exists in fragments across the globe. A system for collecting, arranging and storing my test results and reports would have been extremely beneficial to my future doctors and myself. It would have eliminated some of the duplicate tests and scans I had to do; and it would have provided a more detailed picture of the history of my symptoms.

  • ​In the absence of this (perhaps unrealistic) system that spits out a historical treasure trove, should doctors be probing patients deeper to glean as much past details as they can? Or should the responsibility, to provide as much information as possible, lie with the patient? I actually think I have shared more in this blogpost than I have ever had the opportunity to share with any doctor in one sitting. Part of the problem is that most people (that I have heard from) simply do not get enough time with doctors to recount their medical history in detail.

  • ​How much focus should healthcare professionals really be putting on "connecting the dots" of our symptoms? How far back do we want them to start plotting? Does this focus increase the risk of looking for, and finding, patterns that don't actually exist (i.e. misdiagnosis)?

  • Given the inverse relationship that exists between prolactin and dopamine (and assuming other major causes have been eliminated), should elevated prolactin levels be considered prodromal markers for PD?

My hope is that these questions will:

  • Encourage PD patients to gather and share as much information as they can remember on the history of their symptoms. The more information doctors and researchers have to work with, the better.

  • Encourage PD patients to educate themselves and learn as much as much as they can (from credible sources) on this illness. A more informed patient is a more empowered patient.

  • Challenge both doctors and patients to be more thorough in the way they ask and answer questions.

  • Engage PD healthcare providers and researchers in conversations about how to "connect the dots" of a patient's history in the most balanced, effective and beneficial way.

​I know that I can't go back and start my fight against PD earlier, but I hope this discussion means that someone else will be able to.


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