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NICOLLE ‘S PERSONAL STORY

I was a young, fun, athletic 37 year old, relatively healthy, living in the heart of Chicago, with an amazing job and awesome social network, when my weight started to suddenly plummet…and rapidly. Test after test, revealed nothing except a clinically deficiently low level of vitamin B12. The lab variances ranged from 211 to 947. I was at 75 and having symptoms of neuropathy.  My weight kept dropping drastically. I went from 114 lbs to a frail 97 lbs. I am 5’5 and petite framed to begin with so I couldn’t afford to spare an ounce (literally ir figuratively). I couldn’t eat or digest anything solid. Oatmeal, soup broth, apple sauce, and Gatorade became my best friends. One meal in the morning was filling and sufficient enough for the entire day. My caloric intake was really low and I was feeling malnourished. Not to mention, the severe nausea and bloating that accompanied it was awful. My loved ones were concerned and I agreed to even see a therapist and nutritionist. Maybe it was my imagination? Maybe it was stress and my poor diet? (I am a self admittedly junk food junkie). Afterall, thousands of dollars in repeated medical tests such as colonoscopies and endoscopies, were inconclusive or within normal limits. I finally moved back home to a warmer climate and to seek the best health care possible. My awesome and highly skilled GI doctor ran a battery of tests from Crohn’s and Celiacs to Pernicious Anemia and everything else in between. It all balanced out like a perfect check book. Negative for all three. Sigh of relief…but still determined to figure out the culprit. He finally suggested a unique and costly test called a Gastric Emptying Scan. Finally, it revealed the culprit and I was diagnosed with moderate Gastroparesis with less than 90% of retention after 4 hours. I was so relieved and became obsessed with learning more about my condition, how to cope with it, and how to help others. Since I am not Diabetic, I was classified as Idiopathic (unknown). I started a treatment by taking Reglan, but it was too agressive for my stomachs lining. So, my doctor put me on a different regiment and prescribed Domperidone (sounded like a fancy champagne to all my non medical friends). However, the problem is that Domperidone was not widely known nor was it FDA approved in the United States so I had to order it from a Canadian pharmacy, and sometimes, would wait months for the shipment to arrive. I am glad to report that I corrected my diet (eliminated fats and fibers) and have gained some weight back, but I still have a little ways to go until I reach my optimal weight. I am feeling healthy, and fortunately, only have flare ups every three or four months. I actively started playing tennis again regularly and gained some energy back. Sharing my story with you has been therapeutic and has allowed me to combine my passion/hobby of writing and fascination with medicine into one story line. Although GP is not curable, it is manageable and treatable. I am optimistic that one day we will find a cure and I want to be a part of it. 

PS-I am not sure if my original diagnosis, a B12 deficiency, had any correlation to the GP diagnosis, but my personal advice is to get your B12 checked (especially if you’re a vegetarian). 

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