Misdiagnosed
As a Physician, I’m More Aware of Looking for Blood Clots in my Patients: Lynette’s Story
In 2014, while in podiatry school, I went to the student health center because I was short of breath and was coughing up blood. The nurse practitioner diagnosed me with bronchitis. Less than two weeks later, I learned the truth — I had a saddle pulmonary embolism, which means a large blood clot was blocking…
Blood Clots Can Be Silent and Misleading: Jamie’s Story
Five days before everything came to light, I sat in a rheumatologist’s office explaining my concerns. Instead of investigating, she dismissed me, chalking it all up to my Ehlers-Danlos syndrome. My after-visit summary simply said to “wear spandex-type garments,” and there was no more that rheumatology could do for me. I left feeling unheard and…
Fight For Yourself: Sarah’s Story
After two long months of debilitating headaches and vision problems, I was finally diagnosed in July 2025 with a cerebral venous sinus thrombosis (CVST), a rare and dangerous clot in the veins that drain the brain, at 24 years old. My first ER trip was in May, when I showed up with stabbing head, neck,…
If You Feel Like Something is Wrong, Please Advocate for Yourself: Nicole’s Story
On October 27, 2024, I was diagnosed with cerebral venous sinus thrombosis (CVST). There was a large blood clot taking up the transverse and sigmoid portion of the venous sinus of my brain. I am still dealing with some neurological deficits. My symptoms started while I was working. Looking at the computer screen, numbers and…
I’m Grateful to be Alive and Share My Testimony: Roxanne’s Story
There was a tingling sensation in my right leg with noticeable swelling, while pain developed in my chest and right side when I took deep breaths. I work as a hairstylist, so tired feet and legs come as no surprise, but this was different. I went to urgent care, and they recommended I go to…
I’m Living My Days to the Fullest: Elizabeth’s Story
In my twenties, I developed a pain in my calf that was extremely uncomfortable. I couldn’t put my foot on the ground to walk. My dad had DVTs a few years before and told me to go to the hospital. At the hospital, I was given an anticoagulant and sent for a scan the next…
I’m Hoping For a Better Outcome: Saru’s Story
I had my blood first clot at 26. I visited a doctor, but they couldn’t diagnose it, saying it would fade with time. After two months, it did fade. At 28, when I was newly married and planning a baby, I got red bumps on my calves. I tried lymphatic exercises for two months, but…
Don’t Accept a Diagnosis if Your Intuition Tells You Different: Jasmine’s Story
When I was 32 years old, I experienced terrible pain behind my knee for weeks. My doctor said it’s from standing, and I need physical therapy. I did that, but the pain persisted. Eventually, I went to a vascular surgeon who did vein stripping surgery. Seven days post-op, I felt sick, like the flu, but…
I Feel Lucky to Have Gotten a Second Chance at Living: Kara’s Story
In May 2021, I was experiencing extreme perimenopausal hot flashes, and hormone replacement therapy wasn’t helping, so I started estrogen-based birth control. Things were improving until one day, I lost my breath while vacuuming. I sat down and thought I might have caught Covid, but I started feeling better, so I got back up, but…
I Listened to My Body and Begged For Answers: Carrie’s Story
On April 4, 2025, I awoke around 4:30 a.m. with the worst charley horse under my left breast, wrapping around to my back and up my arm. I went to the emergency room and was diagnosed with abdominal pain and sent home with naproxen. Two days later, I returned to the ER with worsening pain…
