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Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: Dec 4 5:59am | Replies (1518)

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@patowen1

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?

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Replies to "Two years ago I had an abdominal blood clot and was diagnosed with Antiphospholipid Antibody Syndrome,..."

Hi @patowen1,

I'm tagging other members who have talked about Antiphospholipid syndrome in other discussions; I hope they will be able to share their experiences and insights with you. Please meet @georgiagirlrelocated, @skymya, @soitis4590, @taogirl2, @colettehellerud, @lagata, @lisaa, @lena999 @zebraclaire97 @irenekw @bruges. You can also read their experiences and insights in these discussions:

– Antiphospholipid syndrome/Hughes https://connect.mayoclinic.org/discussion/antiphospholipid-syndrome-hughes/
– Antiphospholipid and Lyme disease https://connect.mayoclinic.org/discussion/antiphospholipid-and-lyme-disease/

According to this article by Mayo Clinic http://mayocl.in/1YaYc5X “People with certain infections, including syphilis, HIV infection, hepatitis C and Lyme disease, among others, have a higher incidence of having antiphospholipid antibodies.”

@patowen1, what symptoms of antiphospholipid syndrome do you have and how are you managing them?