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Mesenteric Panniculitis or Sclerosing Mesenteritis
Digestive Health | Last Active: Dec 4 5:59am | Replies (1518)Comment receiving replies
Well, it's a fairly ominous revelation when you end up here to learn about your diagnosis. I thought the hospitalist was being melodramatic when he squatted down by my bed to say I had mesenteric panniculitis and he had to research it because I was the first patient he'd ever diagnosed with it. I'm sure the rest of you know how disparaging that can be, especially on top of the ridiculous pain. I am beginning my search for a GI doc who does not have to Google the damn thing. I'm on 40mg of Prednisone, Pepcid, and Tamoxifen (a breast cancer treatment, for some unknown reason). This pain giggles at Percocet for a few hours, then just laughs at it. I'm no stranger to pain, but this is a world of difference and it's truly beating me down. Thankfully, and sadly, it is a blessing to discover I am one of so few, but not alone.
Replies to "Well, it's a fairly ominous revelation when you end up here to learn about your diagnosis...."
Hello @dementorshoes and welcome to Connect.
You must be relieved to have a diagnosis for this painful condition. Yes, rare disorders are just that, very rare. You are fortunate that it was found so that you can find some appropriate treatment.
Are you near a Mayo facility (located in Minnesota, Florida and Arizona)? They have some great doctors who specialize in this disorder.
Please continue to post as you look for assistance in dealing with this new health problem.
You might find this YouTube video helpful. It was made by a patient at Mayo,
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Wow! You touched my heart and I'm sure the hearts of many reading on this forum! Just to give you another medication suggestion. I am also on azathioprine, which suppresses your immune system. I have was first diagnosed in March 2014 and ended up in remission for two years, only to have it rear it's ugly head in August 2017 and I have been off sick ever since. I also find that stress and climate are playing major roles in flare ups. I hope that you find something on this forum to help. At least you know that you are not alone.