Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @billymac65, Dec 6, 2012

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

@lisas444

Good to have you James (Reid). So much good info (350 members) and looks like you had a couple referrals already
Lisa

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Lisa, how do I join this support group? I was diagnosed with MP in February.

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@lauramolzen

I haven’t talked to my doctor yet but I have my post op appointment next Wednesday to go over everything. I just saw the diagnosis on the lab results and couldn’t find much information so was hoping someone could help me make sense of it. Thank you for reaching out I appreciate it.

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Hello @lauramolzen

You posted several months ago about a diagnosis of Mesenteric Panniculitis. I was just wondering how you are doing?

I hope you are feeling better. Will you post an update as you are able?

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Hi I was recently diagnosed with Mesenteric Panniculitis. I was in the ER with severe pain and they saw the "misty mesentery" on my CT scan. Just looking for some support and guidance. I see a GI specialist next week.

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@shandle

Hi I was recently diagnosed with Mesenteric Panniculitis. I was in the ER with severe pain and they saw the "misty mesentery" on my CT scan. Just looking for some support and guidance. I see a GI specialist next week.

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Hi @shandle – I was diagnosed with MP in February during an ER visit and have had 2 ER visits since then. I encourage you to go to Facebook where there are 2 support groups with great info, all taken with a grain of salt. The most important things to do now are to hydrate with at least 1 gallon of water a day, seriously reduce stress, get lots of sleep and watch your diet. I cut out sugar, dairy, spicy foods, fried foods, fatty meats. Mayo has 2 docs who specialize in the mesentery, so I suggest you try to see one. I have an appt 10/4 with a doc from Mayo in Rochester, MN. Sending positive thoughts to you!

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Hi Erin. I recently joined one group and have been reading thru the posts. I have been eating a GI soft diet since I got out of the hospital and taking Toradol and Zantac daily and my symptoms are not as severe. More mild discomfort and tenderness. I see a GI doctor in a few days.

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