I have always felt like I had many more doctor visits than anyone else I knew growing up.
I was told “it could not be celiac” because my blood panel was negative and “no one in my family has it”. My skin sometimes hurts in a weird tingly ice cold pins and needles way, and I get weird rashes on my scalp that make me look like I’m scratching at lice bugs. They did some tests but nothing came of it (terrified me half to death when they scanned for brain tumors). Then, about 3 months ago, it was as if my body just gave up. I was anxious all the time, and I was hospitalized for severe inflammation in my chest that had me on bed rest for 2 weeks. I did have warts on my hands and feet off and on growing up and into my early twenties.
(well, someone has to be diagnosed first for that statement to be relevant and blood panels are negative often enough to keep people undiagnosed! When nothing conclusive was discovered I was just…forgotten. It’s just inflammation, take it easy, take some more pills, and it will go away. I suffered on and off with depression and heart palpitations.
I tried but kept feeling faint on the treadmill and then, my legs and back went numb.
I heard “it’s just menopause”, fibromyalgia, the catch-all “IBS and GERD””…and my favorite, “it’s just stress” because my father had just died.
I have no psychiatric problems, but I sure as hell thought I would lose my mind.
We spent K out- of -pocket on tests, physical therapy, alternative doctors–anything to to help me get well. I lost major muscle mass and tone, my ability to comprehend, articulate and recall information. They gave him some breathing stuff to calm his lungs down and then the nurse brought in this wonky looking pain medicine.
I was offered more drugs than you can imagine: pain meds, anti-depressants, anti-anxiety meds, sleep meds, antacids, thyroid meds I did not need —and even sent to a psychiatrist– to get me to shut up and leave the office.
Drugs made my already ripped up gut worse and so I did not take them.
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In 2007, after a year of constant stomach pain and losing 15 pounds on an already pretty slim fit, I finally listened to Mrs. I went to a homeopath; she took me off gluten without a screen. I just lay there staring at the ceiling because I couldn’t read anymore. Finally someone ran a blood test and bingo – a biopsy a few months later confirmed it.
I was diagnosed with interstitial cystitis but only by the questionnaire, not by a chemical test.