October 3, 2012

Day 3: Getting a Diagnosis

On Day 30 I will share my complete story of being diagnosed with Postural Orthostatic Tachycardia Syndrome.  But what’s relevant to this post is that I spent four and a half years searching for the correct diagnosis.  It was a long, grueling four years filled with frustrations, lots of research, incorrect diagnoses, vials and vials of blood samples, and more doctor appointments than I can even begin to count.

Each time I saw a specialist, they would look at my shockingly normal lab results and tell me I had Chronic Fatigue Syndrome.  And yes, I believe the Chronic Fatigue Syndrome is a real thing, but something kept telling me to keep searching.  It wasn’t until I moved all the way across the country and decided to try out the Vanderbilt Integrative Health Center that I met a lady who went to my high school in California.  She was a PA who was assigned my case to make sure I was getting comprehensive care from all physical, mental, and emotional aspects.  Our appointments weren’t too thrilling, and nothing miraculous happened.  But one day I was supposed to be flying home from California and was incredibly sick.  My lame doctors in Clarksville weren’t doing anything (big surprise!) and I was able to get a hold of Blaire.  She patiently listened to my symptoms and said, “Have you ever heard of POTS, because that sounds like exactly what you have.  Why don’t you look it up and come in for an appointment with our director when you’re back from your trip.”  All it took was one phone conversation for four years of searching for a diagnosis to end.

Bottom line: Keep asking questions.  You know your body better than anyone else.  Each conversation, each test, each blood draw will bring you closer to the correct diagnosis.  Keep searching until you know you’ve found the right answer.

What's your diagnosis story?

Disclaimer: While I am sharing information I have researched, read about, and found to be helpful myself, I am not a doctor and all decisions regarding your own personal treatment should be discussed with your own doctors.  Remember, I am just a patient.

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