Mesenteric Panniculitis or Sclerosing Mesenteritis
I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).
I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?
Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!
Interested in more discussions like this? Go to the Digestive Health Support Group.
Hello, I live in the DC/Baltimore area. I was just diagnosed with MP. My GI doctor is trying to find another doctor for me to go to for a 2nd opinion. What is the name and phone number of the doctor you found that was familiar with MP? Thank you.
I like the docs at Capital Digestive in DC; but no real experts in DC or up at Johns Hopkins. The real authority in the US is Dr. Darrell S. Pardi, MD up at the Mayo Clinic in Rochester, MN; but, that’s a journey. Good luck!
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.
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 .
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.
I was recently diagnosed with MP. I was told that I have probably had this condition forbyears. I do not have much pain but I am certainly fatigued and nauseous. I have my first appointment with a gastroenterologist next week.
Welcome to Connect. I’m very sorry to hear about your diagnosis; however, here you will find so many other members who share your pain and can offer support.
I would like to bring in @bertbiz, @mardellepoff, @miker46, @billymac65, @mommasaid, @vdouglas, @doron, @ngilson, @billindc, and @adeleccj57, in the hope that they will share their experiences with you.
Viva, we would love to get to know you better; what are you doing to manage the fatigue and nausea? Has your doctor put you on any medications that may be causing these symptoms?
I am just testing to see if I can post. I tried and had no luck a second ago.