Indiana Realtor Shares How Persistence Led to a Life-Changing Diagnosis
How Being a Patient Advocate Saved My Husband from Misdiagnosis
A few years ago, my husband called me while I was at work. I could immediately tell something was wrong. He stammered, “Hey, I’m at the Emergency Room. Bill brought me here.”
I already knew what was going on. He had been to the ER a few times for chest pains, and every time the doctors dismissed him with, “It’s just indigestion.” My husband is a tough guy. He would never go to the ER for something as simple as indigestion. But he also isn’t the best at advocating for himself as a patient. So I said, “Okay,” hung up the phone, and headed to the ER with a big chip on my shoulder.
My Own Experience With Misdiagnosis
The doctor we saw that day was a resident, and poor thing had no idea he was about to get his first taste of a mama bird wife who wasn’t afraid to speak up. I had been down this road before. In my twenties, I woke up one morning with sores all over my body. I saw two general practitioners, a dermatologist, an infectious disease doctor, and even went to two ERs. Everyone was stumped and prescribed a "healthy" dose of steroids to combat whatever my body was fighting. I was so puffed up, I looked like a toad. Finally, it was my OBGYN who diagnosed me with chickenpox after six doctors had missed it over the course of two months.
Standing Up for Answers
When this resident started waving my husband off again as having “just indigestion,” I looked him square in the eye and made it very clear that we were not leaving that ER room without either answers or an appointment with a specialist. I also told him that if I had to bring my husband back again, I would file a medical malpractice suit against both him and the hospital. My threats were not empty.
That changed everything. My husband went in for a colonoscopy and an appointment with a GI specialist immediately. That’s when we finally got real answers. He was diagnosed with Celiac disease and fatty liver.
Why Misdiagnosis Happens More Than You Think
This happens way too often. Studies show that nearly 1 in 20 adults in the U.S. is misdiagnosed each year. Research from the National Academy of Medicine
calls diagnostic error a “blind spot” in healthcare, affecting nearly every patient at some point in their lifetime.
Learning From My Friend’s Journey With Occipital Neuralgia
When I saw my friend Nikki Davis, a local realtor, share her own story of battling nearly nine months of migraine-like symptoms before finally being diagnosed with occipital neuralgia, it brought back a lot of old memories. She went through doctor after doctor before she finally got answers and real treatment.
I caught up with Nikki and asked her a few questions about her journey.
When did you first realize something was wrong, and what made you decide to start pushing harder for answers?
My first symptom was ear ringing, and that started late 2024/ early 2025. Being in my late 40s, though, I just chalked it up to age and liking to run a heater in my office nonstop. Couple that with enjoying concerts a few times a year, I just figured it was par for the course being 46. However, by mid-January, I started having a stabbing pain in my right ear. Assuming it was some sort of ear infection, I finally went to the doctor. After my insurance dropped my current carrier, I was lucky enough to get in with Primary Care Plus, and Natalie Taylor, FNP-C has been my primary care provider since JAN. When she looked in my ears, though, there was zero sign of infection, redness or swelling. We threw the book at it, though, just in case with nasal sprays, allergy meds, antibiotics, and steroids to no avail. That was the start of this journey.
Was there a turning point where you felt like, “I can’t let this go. I need to advocate harder for myself?"
What role did symptom-tracking (with ChatGPT or otherwise) play in finally getting doctors to see the bigger picture?
I used ChatGPT to start tracking my symptoms and all of my doctors' appointments. I asked the software questions and explored different possible causes until those leads were worn out. In total, in terms of testing, I had a carotid artery scan, two MRIS, a nasal/ throat test, and a lymph node biopsy. In the grand scheme of things, for as disappointing as they were to not give me answers at the time, they have all helped me on the path to rule out what my condition wasn't. With that said, each doctor appointment and test was tracked in AI, and as I went along, I asked the software to give me a summary of my visits, doctors, and symptoms etc. I would then use those letters to take to appointments with me and/or send the write-up ahead to the doctors before I even set foot in the door. When it was all said and done, after exploring multiple conditions, I narrowed it down to the two that I suspected the most before my last doctor visit. I can't tell you how validating it was when that doctor said I had one of the two. Thus begins my new journey of treatment and trying to find out the cause. Whether it was from a fall or is an autoimmune or other condition, the next path will take us into even more discovery.
Were there moments when you felt dismissed or not taken seriously, and how did you handle that?
I wish that my condition had been caught many months and multiple doctors ago. However, despite some moments of disappointment in one doctor in particular, I choose not to look back and to be grateful that I am at a place where I can now get treatment and try to improve my condition.
I am so blessed to have such a support team. My husband has been with me and my migraines since my son was born 20+ years ago. He knows the ins and outs of what it means to help me on my bad days, and he's right there with an ice pack, a lidocaine patch, an ice facebath, or my medications when I need him. Sometimes it's as little as him just holding me in a very long hug to help trigger good brain chemicals to help combat the pain that I am most grateful for. My friends and bosses are also clutch when it comes to understanding and offering to help when needed. While I am EXTREMELY independent, I know when I need to ask for help, and they are quick to give it. Lastly, my amazing rescue dogs and my farm animals are where I find my peace. When you set your parasympathetic nervous system up to successfully reset and repair, you start to efficiently battle stress and the pain that can come with it unintentionally. My lab/great Dane Gibby, in particular, is my soul dog. He won't leave my side when I don't feel well, and he has been known to curl up and sleep with me on a cold bathroom floor when my migraines are at their worst. He's my constant companion, and when I am struggling the most, simply sitting or lying down with him and petting him helps release endorphins and oxytocin, which in turn help combat pain and elevate my mood.
Stick with it and don't give up! It took 5 doctors and 8 months to diagnose my condition, but on some of the Facebook groups for my condition (occipital neuralgia), others suffered for years if not decades, before figuring out a diagnosis. You are your own best advocate and/or you are the best advocate for a loved one, too, so keep fighting till you get answers. Additionally, treat every doctor appointment like you are going to a job interview. Dress nicely and come prepared with documentation/notes/records/ past tests etc. If you have the opportunity, send along anything you can ahead of time via email or through your patient portal. When a doctor comes in to see you, keep your conversation concise and to the point. They have very limited time to see each patient, so make the most of your interaction. I would also advise using your patient portal to keep your doctors up to speed on your symptoms and/or to express your questions and concerns. Create a dialogue that encourages conversation back and forth vs. allowing it to be one-sided.Next, dive into AI software like ChatGPT to help you. While the software can never replace a doctor, it can be a very valuable tool to help you organize information, research topics, and more. I remember back in the day when I graduated high school, one of the gifts my mom gave me was a Mayo Clinic book of known diseases/ conditions at the time. Can you even picture that nowadays? It was hardbound with hundreds of pages, but I have to tell you at the time, it was an amazing resource. Now we have technology at our fingertips to help, and you should definitely take advantage of the benefits it can give you!Lastly, if you suspect a certain condition or condition category, spend time in online chat groups like a Facebook group to explore those posts and conversations. You might stumble upon people going through something very similar to you that you can learn from. You might find a phrase or word you should look up to see if it fits you. Treat every little bit of information you discover and log like you are a detective, and leave no stone unturned!
Now that you’ve started treatment, what does healing and hope look like to you?
Healing and hope look like returning as close to normal as I can. The first nerve block gave me considerable relief, and I can't wait for the second one. However, I realize that they are only a temporary fix. So the next chapter begins as I fight even harder to dive into the whys and the long-term look at what my new normal will become. In the meantime, the grand scheme of things means reducing my stress, eating a more anti-inflammatory diet, and taking every excuse to enjoy my farm and the place of peace that I have spent the last three years creating on our homestead.
The Importance of Patient Advocacy
Both of our stories point to the same truth. You have to be your own advocate in today’s healthcare system. Don’t be afraid to speak up, to keep pushing, and to demand answers. Sometimes, persistence is the only thing that stands between ongoing pain and finally finding the care you need.
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