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Carly’s Fight Like A Girl Story (Undiagnosed)

Purple Ribbon LRI do not have an official diagnosis, but I have been fighting for almost four years with no real diagnosis and would like to share my story. My sophomore year of high school (I was 15, almost 16) there was one night when I woke up in a horrible pain. It was my stomach (my actual stomach, right below my rib cage) and I could barely move. I was miserable. That was the first night that started into an ever spiraling downfall.

We thought it was just a stomach bug (which hey, it could have been). I stayed home for a couple days feeling bad, but I never threw up. I went on with my life. I had always had slight stomach problems. Ever since elementary school, the nurse would call my mom to get me with a stomach ache and a fever, although I never threw up. At the time, I was still seeing a pediatrician and he referred me to a pediatric GI. He did an upper endoscopy and diagnosed me with acid reflux.

I went through ever single medication for acid reflux with no luck of getting better. The summer after I graduated high school, I got worse. I only weighed about 115 pounds to begin with, with a height of 5’5”. I lost 20 pounds I was so sick, making me severely underweight. I had turned 18, so I started seeing a family practice physician who was looking through my medical records.

My physician looked at one particular night I was in the emergency room when I was 13. I had mono, a kidney stone, and ovarian cysts all at the same time. (A few months later I was diagnosed with Polycystic Ovarian Syndrome, PCOS, and have been on birth control ever since to control those symptoms). The new doctor asked if they had tested the kidney stone when I passed it. I replied no, they just gave me some pain medicine and sent me on my way with instructions to drink a lot of water. She said that is okay, if you’re forty, but that one at such a young age was a huge marker for an underlying disorder.

She began running some tests. For the past three years, I had been seeing my GI every three months. Now I was seeing my new doctor every two weeks for tests, trying out new medications, and check ups. She decided that just looking at my GI symptoms was not enough because I had severely low blood pressure, low blood sugar, migraines, and kidney stones.

Soon after that, I was in the hospital with a kidney infection. I was very sick, and it took four trips to the hospital to finally get rid of it. One of those trips, an ambulance was called to the university I attend. She decided that that, along with looking back at the fact that it took three different rounds of antibiotics to get rid of an ear infection a year back, that I had an autoimmune disorder.

This is very ironic considering that I am a nursing major and cannot dream of any other occupation. However, after taking 13 tubes of blood with no real test results (other than high cortisol) she gave up and refused to continue testing. She even tricked me into taking antidepressants for a while before giving up. Another doctor in her practice instructed me to stop taking them one night when I had been complaining of chest pains because they were making me tachycardic.

I am now waiting for an appointment with a new doctor, who is an internal medicine physician. I am hoping for a diagnosis and treatment, although I believe just having a diagnosis will help. Currently, there is a possibility that I am having complex partial seizures in addition to other symptoms, but they are having a hard time causing one to confirm. I refuse to give things up like swimming, hanging out with friends, concerts, hiking due to any of my symptoms, so I am constantly praying for a diagnosis!

Submitted 8-4-2012

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

One comment

  1. Amanda


    I just read your story, and want you to know it literally sounds just like mine. I got sick when I was a little older, and I was just “diagnosed” this year, at age 27 – after a million doctors and treatments who didn’t believe in me, told me it was stress or in my head, made me doubt myself, etc. I use quotes because although I have a label for part of what is going on, I’ve been in and out of the hospital four times since I was diagnosed in April – the treatments aren’t working, which means either the diagnosis is wrong, or that there is something else on top of the diagnosis that isn’t being treated, keeping me sick. I just finished school but can’t work or anything because I’m too sick to leave home often.

    Please feel free to reach out if you’d like to talk, and if not, please know you’re never alone.


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