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Sat, Feb 8 8:34am · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Two years ago I had an abdominal blood clot and was diagnosed with Antiphospholipid Antibody Syndrome, a rare disease. I was also diagnosed with Essential Thrombocythemia, another rare low grade blood cancer. I was put on baby aspirin, Eliquis, and Hydroxyurea for the blood cancer. Two months ago I was diagnosed with Mesentery Panniculitis, another rare disease by CT Scan. My internist and onlologist consulted with the radiologist who diagnosed the MP and they all agreed that since the Mesentery had not changed in a year that I did not have MP. They also now say I do not have Anitphopholipid Antibody Syndrome which supposedly does not go away. I am starting to lose faith in the tests and doctors. Anybody else have similar experiences?

Mon, Jan 20 1:37pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I also failed to mention that 2 years ago I was diagnosed with Antiphopholipid Antibody Syndrome and Essential Thrombocythemia, both considered rare diseases. I was put on Eliquis, baby aspirin, and a low grade oral chemo, Hydroxyurea.

Mon, Jan 20 1:35pm · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I was just diagnosed with Mesentery Panniculitis by CT Scan. I went to the ER in excrutiating pain in my lower back and around the hip into my abdomen. I had this happen two years ago as well. My primary care doc wants to send me to a rheumatologist. She also mentioned doing a needle biopsy to see if there is cancer. I live in Denver and wonder if anyone knows of a doctor (anywhere) who has experience with this disease.