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!!
Bill
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My daughter has had similar GI problems for years. She is still undiagnosed. I started going on these groups to do research and get info. When she was a teen she had lymphatic malformations which they surgically removed. There was inflammation in mesentery at the time. So they found it, but they did not diagnose her properly and had no idea what the real problem was. They thought the surgery would cure her and 10 years later she still has pain and horrible GI problems. We are at a loss just finding a doctor to diagnose her properly. I am pretty sure she has mesenteric panniculitis since what she had in her teen years is tied in with this type of disorder. Now to hear that even if we can get her diagnosed there really isn't treatment is very frustrating. The healthcare plan she has limits her ability to find a quality doctor who could diagnose her, much less treat her. They too told her to go to a psychiatrist and wanted to put her on an antidepressant. I feel for you and I hope you are able to find help.
Welcome @ghennel, many of us have had similar experiences. But we -together-have been able to aid each other with important foods/diets to try and medicines that help. Mayo clinic has been a great help to others who have been able to take advantage of it. Ask lots of questions on the site, share your experiences and those of your daughter. Many choices help, cut back on all the stress you can, change your life to get more rest -as much as you can – and try some other suggestions on diet and medications. Best of luck -stick with us!❤️
Umm….welcome to the club?!?! I was diagnosed with MP in 2014 after a bad fall on black ice. After being put on Prednisone for 6 months (that medication has it's own evils!), I went into remission until August 2017. Since August, I have been on Prednisone and Azathioprine (to settle my immune system down) and tamoxifen. I have definitely been battling to get back to remission, but it has been a tough road. Are you feeling any symptoms?
Last Sunday I was diagnosed with Mesenteric Panniculitis and a supraumbilical midline hernia through CT scan! The ER doctor had to use Google to tell me what I had because nobody in the hospital has ever heard of it! So all I've been doing is reading up on it but still don't know what to do! The ER Dr told me I need a HUGE diet change from what she read. I've been complaining about stomach pain for so long with my Dr and told him I though I had a hernia and all he did was just give me meds for ulcers. I throw up all the time, I'm constantly so so bloated, I can't eat very much because I get full so fast or food makes me feel nauseated. It's been a rough road so far for so very long 😣
@constancelee
I am now healing from major surgery. They tried to take a biopsy by lapro but couldn’t find it. Opened me up to find the mass and check for other underlying conditions. Diverticulitis was found. Nothing else but the small mass. If this becomes inflamed what am I looking at for symptoms? Mine was found by a CT Scan. I understand the experts are at Mayo. PS I went in because of IBS pain on my left side but the mass is on the right. My pain is a 10 on the 1-10 scale.