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Mesenteric Panniculitis or Sclerosing Mesenteritis
Digestive Health | Last Active: Dec 4 5:59am | Replies (1518)Comment receiving replies
Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn't seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!
Replies to "Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I..."
Welcome to Connect, @adelecj57. I'm so sorry about your diagnosis, but you've come to the right place to find support and information.
I see that @billindc has addressed your question, (thank you billindc!), and I wanted to follow up, and introduce you to the many Connect members who live with mesenteric panniculitis. Please meet @billymac65, @mommasaid, @vdouglas, @doron, @ngilson, @bertbiz, @mardellepoff, @txbear and @miker46.
Some, like you, were diagnosed recently, and other members have been managing the condition for quite some time. You may also read the discussion here: http://mayocl.in/2eZsrdG.
@adelecj57, has the FODMAP diet helped you? If so, could you tell us a little more about your experience with the diet?
We contacted Dr. Pardi, who, through a few contacts, put us in touch with Dr. Raymond Cross at University of Maryland Medical Center. He is GI doc with a primary focus on inflammatory bowel disease and has one other patient with MP. He may be a place to start.
Thank you. I will check him out .<br>Adele <br>
I have only just looked into the FODMAP diet so I haven't had a chance to start yet. Just did a little shopping today for some items. I will let you know once I give it a good try.<br>Adele <br>
Hi, I am just seeing an email you sent me back in June! I hope I had responded, but if not, I wanted to see how your husband is doing. I have not been on the forum for about 8 months, and just started back since I am going through a flare-up and have decided to really get some answers, possibly up at Mayo. How are things? ~Bll (Silver Spring)
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Thanks. I do see one of the doctors at Capital Digestive. He is at the Olney, MD office. He is trying to find another doctor in the area that might know more about MP. I was recently diagnosed and just had some blood work done to see what my inflammation markers are. He mentioned prednisone and some other medicine but wanted to wait. I have a followup CT scan in January to see if there are any changes to the small abdominal mass I have (it was benign). I have been reading about the FODMAP diet and find that some of the foods I tend to avoid are the ones on the do not eat list.I don't think I want to go to MN but will if I have to.