For over 20 years, I’ve lived with peripheral neuropathy—a quiet background of constant numbness, tingling, and pain-causing supersensitivity in my feet that, until recently, stayed mostly contained. In the last two years, it crept into my hands—a subtle shift that sparked both curiosity and concern. It’s been a mystery, not only because it hadn’t really progressed until recently, but also because I was told early on by my original primary care physician that I would likely never know the cause.
Alongside this, I’ve navigated antiphospholipid syndrome (APS), a serious autoimmune clotting disorder now more responsibly managed with Coumadin, after nearly dying from a massive “saddle” pulmonary embolism. (I also have vitiligo, another autoimmune condition that paints patches on my skin.) Add in bouts of deep fatigue, muscle pain, cognitive fog, weight gain, and debilitating eye pain and headaches over the past two years, and my health felt like a puzzle with missing pieces. Thankfully, ashwagandha—an adaptogenic herb—made me feel like I had turned back the clock and regained a substantial sense of health and wellness. But I also knew that, while it may have been treating the symptoms, it probably wasn’t addressing the core issues.
The eye aches, conjunctivitis, and headaches got bad enough one day to warrant a visit to urgent care. Unsurprisingly, they couldn’t determine what was going on, so I scheduled a visit with my primary care physician, whom I’ve been seeing for over ten years and whom I deeply respect. He also couldn’t pinpoint the cause but suggested an X-ray to check for sinus issues and prescribed an antiviral medication.
So, you probably already know what I did. :) I turned to my good friend, Grok.
I learned that APS isn’t just about clotting. It can inflame nerves, starve them of blood, and cause neuropathy, fatigue, and brain fog. My eye pain and headaches likely stemmed from APS-driven inflammation—a connection the doctors missed. I also came across the idea that my vitiligo, with its autoimmune roots, could suggest reactivation of the Epstein-Barr virus (EBV), that sneaky culprit, though I haven’t followed up on that.
What I did follow up on was the direct connection between APS and:
- neuropathy, which occurs in 10–20% of severe cases (like mine), and
- ocular effects, seen in 15–20% of cases.
Those are not insignificant percentages—they’re known, potential complications of APS. Yet neither my current doctor nor the previous ones ever made those connections. And considering I’ve had neuropathy for as long as I’ve had APS, over 30 years, and something I likely discussed with a medical professional at least once a year, it makes me think that many reasonable medical connections simply don’t get made. Especially in a field that seems to require a level of busyness that makes reflective care more difficult.
I remember taking my grandfather to the hospital years ago for pneumonia. He was given a sulfa-based antibiotic injection despite both his medical history and my explicit warning that he was allergic. It resulted in a large ulcer at the injection site. When another doctor came in later, he said, “I see we’re treating your grandfather for an ulcer in his arm.” I said, “No, you’re treating him for pneumonia. The hospital caused the ulcer.” Needless to say, I’ve been super careful not to be awed into silent submission in hospitals since then.
I cannot imagine how any one person could keep track of all the medical disorders a general practitioner might encounter, nor all their potential connections. Grok let me know that standard treatment for APS includes hydroxychloroquine—a common and relatively safe drug also used as an antimalarial. So, I called my doctor’s office, they scheduled an appointment, and he sent in the prescription.
Like I said, he’s a good guy, and I trust him. But I do think on this visit he was a little quiet, and the appointment was a little short. Maybe he was thinking, “I’ve always hated all this self-diagnosis through the internet, and now it’s magnified by AI!” Or maybe, “Dang, that’s something I should have caught or suggested years ago.”
I don’t know if Grok’s research is going to turn out to be helpful, or if the hydroxychloroquine will help—I hope so—but I can imagine that being a doctor right now is not easy. I can also imagine, from my one personal experience, that AI is going to significantly revolutionize medical care by managing the massive volume of information and helping make connections that would be hard for a human to track.
