1. < Digestive Health

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

Interested in more discussions like this? Go to the Digestive Health Support Group.

jimbo91372 | @jimbo91372 | Aug 6, 2018
In reply to @lisalucier "Hello, @jimbo91372. Welcome to Mayo Clinic Connect. I can see that you are concerned for your..." + (show)
@lisalucier

Hello, @jimbo91372. Welcome to Mayo Clinic Connect. I can see that you are concerned for your wife, and it's nice that you are looking into the best doctors for her recent diagnosis of messenteric panniculitis. So I'd like to invite @jolied @viva @pcfromfm @billindc @pcfromfm @dianajane @IndianaScott who may know of medical centers in the Chicago area to recommend for this disease or who may be just familiar with medical centers in that region in general that they might recommend.

In the meantime, you might be interested in reading this Mayo Clinic information on the disease: https://mayocl.in/2ObBGc8.

@jimbo91372 - what symptoms are the most bothersome for your wife currently?

@mpdx -- I also wanted to extend a welcome to you, as well as mention a few of the summary points you made from reading past posts in this discussion to see if any of the members I've tagged here or other members might have comments:
I have come away with the following:
1) sometimes autoimmune in nature and AIP diet can help
2) typical treatment involves prednisone or meloxican(m?)
3) lymphoma is sometimes/often(?) related (hate hearing this)
4) very few specialists in US (with Mayo – Pardi or Alexander- being leaders.)

When is your follow up with gastroenterology, @mpdx? How has the pain been?

Jump to this post

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.

REPLY
jimbo91372 | @jimbo91372 | Aug 6, 2018
In reply to @jimbo91372 "My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago..." + (show)
@jimbo91372

My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago area and are wondering if anyone can recommend a doctor in our area? Her GI doctor is unfamiliar with the condition and dosent really know what to do. We are in the process of researching doctors but as a lot of you probably already know not many doctors can help with this disease! Hope to hear from someone soon ,thanks!

Jump to this post

Hi @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!

REPLY
PCfromFM | @pcfromfm | Aug 6, 2018
In reply to @jimbo91372 "My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago..." + (show)
@jimbo91372

My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago area and are wondering if anyone can recommend a doctor in our area? Her GI doctor is unfamiliar with the condition and dosent really know what to do. We are in the process of researching doctors but as a lot of you probably already know not many doctors can help with this disease! Hope to hear from someone soon ,thanks!

Jump to this post

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?

REPLY
Moderator
Lisa Lucier, Moderator | @lisalucier | Aug 6, 2018
In reply to @lisalucier "Hello, @jimbo91372. Welcome to Mayo Clinic Connect. I can see that you are concerned for your..." + (show)
@lisalucier

Hello, @jimbo91372. Welcome to Mayo Clinic Connect. I can see that you are concerned for your wife, and it's nice that you are looking into the best doctors for her recent diagnosis of messenteric panniculitis. So I'd like to invite @jolied @viva @pcfromfm @billindc @pcfromfm @dianajane @IndianaScott who may know of medical centers in the Chicago area to recommend for this disease or who may be just familiar with medical centers in that region in general that they might recommend.

In the meantime, you might be interested in reading this Mayo Clinic information on the disease: https://mayocl.in/2ObBGc8.

@jimbo91372 - what symptoms are the most bothersome for your wife currently?

@mpdx -- I also wanted to extend a welcome to you, as well as mention a few of the summary points you made from reading past posts in this discussion to see if any of the members I've tagged here or other members might have comments:
I have come away with the following:
1) sometimes autoimmune in nature and AIP diet can help
2) typical treatment involves prednisone or meloxican(m?)
3) lymphoma is sometimes/often(?) related (hate hearing this)
4) very few specialists in US (with Mayo – Pardi or Alexander- being leaders.)

When is your follow up with gastroenterology, @mpdx? How has the pain been?

Jump to this post

Thanks 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.

REPLY
PCfromFM | @pcfromfm | Aug 7, 2018
In reply to @jimbo91372 "My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago..." + (show)
@jimbo91372

My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago area and are wondering if anyone can recommend a doctor in our area? Her GI doctor is unfamiliar with the condition and dosent really know what to do. We are in the process of researching doctors but as a lot of you probably already know not many doctors can help with this disease! Hope to hear from someone soon ,thanks!

Jump to this post

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!

REPLY
jimbo91372 | @jimbo91372 | Aug 7, 2018
In reply to @jimbo91372 "My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago..." + (show)
@jimbo91372

My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago area and are wondering if anyone can recommend a doctor in our area? Her GI doctor is unfamiliar with the condition and dosent really know what to do. We are in the process of researching doctors but as a lot of you probably already know not many doctors can help with this disease! Hope to hear from someone soon ,thanks!

Jump to this post

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.

REPLY
jimbo91372 | @jimbo91372 | Aug 7, 2018
In reply to @jimbo91372 "My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago..." + (show)
@jimbo91372

My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago area and are wondering if anyone can recommend a doctor in our area? Her GI doctor is unfamiliar with the condition and dosent really know what to do. We are in the process of researching doctors but as a lot of you probably already know not many doctors can help with this disease! Hope to hear from someone soon ,thanks!

Jump to this post

she has joined this group, thanks for the info!

REPLY
PCfromFM | @pcfromfm | Aug 7, 2018
In reply to @jimbo91372 "My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago..." + (show)
@jimbo91372

My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago area and are wondering if anyone can recommend a doctor in our area? Her GI doctor is unfamiliar with the condition and dosent really know what to do. We are in the process of researching doctors but as a lot of you probably already know not many doctors can help with this disease! Hope to hear from someone soon ,thanks!

Jump to this post

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!

REPLY
jarnold246 | @jarnold246 | Aug 13, 2018
In reply to @beallm "Hello, I was diagnosed with Sclerosing Mesenteritis in April after going to the ER with pain..." + (show)
@beallm

Hello, I was diagnosed with Sclerosing Mesenteritis in April after going to the ER with pain and vomiting. It was discovered with a CT scan and showed several nodules on my mesentery. I have seen a Gastrologist that has referred me to the research hospital. He said that they are the only people that will know how to treat this disease because it’s so rare. It is taking me months to get an appointment and I still have several weeks left before my appointment. I’m really concerned because I’m getting worse. I’ve taken prednisone and zofran for nausea. I’m looking for someone else who has been diagnosed and has more information on this disease. Also, I had gastric sleeve surgery in 2013 and I’m wondering if it is a cause for this disease. If anyone knows if it has been linked please let me know.

Jump to this post

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.

REPLY
jarnold246 | @jarnold246 | Aug 18, 2018

Can 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?

REPLY
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