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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!!
Bill
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Hi Lisa, thank you for the welcome! We are currently putting together a package to send to Mayo. She is most bothered by the “sick feeling” , and the cramping/ bloating . She says that the pain is not terrible it’s just non stop now for 7 months! She is on budesonide right now but we haven’t noticed a difference in her condition. Also a follow up MRI showed no significant changes.
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1 ReactionHi @pcfromfm, thank you and my wife has been in touch with a lady that runs a FB page but has yet to connect. I wonder if this is the same one? She is constantly feeling sick, cramping/ bloating, and tightness. It was discovered through an MRI and CT. I wish I could do more for her but I feel helpless!
Sounds like you are already doing a great job-just increasing your knowledge and understanding of how this disease presents and being patient with her frustrations and coping. Each will change periodically. We all struggle with managing. Have you found foods that are triggers? Many of us have found more rest-just being prone and relaxing helps -I am in bed most evenings by 7. (A very boring person!) also I have juggled diet for many years and have -for now-come up with definite foods that I have eliminated and that has helped a great deal. I live very far north and have no Doctor who knows anything about my issues. So I must be very careful. Have you come up with any especially positive coping skills?
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1 ReactionThanks for mentioning this is not a disease of interest to you, @dianajane. If you receive more emails notifying you of posts from this discussion, you may unsubscribe to just this discussion at the bottom of any email received.
Facebook page is called-“ Sclerosing Mesenteritis”. It’s s closed group. Good information and lots sho share. I always figure the more we know the better. So many have different symptoms, side effects, perspectives. Etc. You never know when something will click to help!
we are still trying to figure out what triggers she has, for sure it seems stress! whenever she gets worked up it gets worse. we are still trying to find doctors in our area.
she has joined this group, thanks for the info!
Great-all good! I have done many elimination diets to help figure out my triggers. I was a teacher in prison, reform school and psychiatric hospitals, plus jr high and high school. So -lol-needless to say-stress played a big part of my life! But now retired I notice it’s effects much more clearly. Be well!
HI. I have had the sleeve gastrectomy too (November 2017) and have been wondering if this is what started it and if it is linked with SM/MP. I was just diagnosed in July with Mesenteric Panniculitis after going to ER with RUQ pain. I had my gallbladder taken out in March 2018 so I know it was not that. More worried about cardiac problems and found out I have this. I'm going to see a specialist at one of our academic hospitals in my area. If you find out anything please let em know, If I find out anything I will post and let you know.
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1 ReactionCan anyone tell me if having an EUS with possible ERCP is a standard test for MP/SM? I went to a GI doc for the first time on Tuesday and he wants to perform this test. Can anyone tell me if they have had this type of study for the diagnosis?