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

@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?

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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.

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@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!

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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!

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@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!

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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.

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@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!

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she has joined this group, thanks for the info!

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@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!

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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!

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@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.

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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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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?

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Hi, new here, just had my annual MRCP/MRI to rule out recurrence of IPMN (intraductal pancreatic mucinous neoplasm) and a new young radiologist identified what he said is mostly likely chronic mesenteric panniculitis. He can identify it in retrospect going back 6 years on scans. All this time my GI doc has been saying my pain was due to chronic pancreatitis. I've had a few surgeries, prostatectomy, cholecystectomy, distal pancreatectomy, splenectomy. I'm here looking for treatment options, doctor recommendations on the west coast and support.

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@vdouglas

Hello @skywave ,

Welcome to the Mayo Clinic Connect. I’m glad you found this site and I hope it can be helpful to you. Sorry to hear you are struggling with some unpleasant symptoms. One of the main difficulties with Mesenteric Panniculitis is finding doctors who are familiar with the disease. I don’t know that the bloating and low B12/iron are caused by MP but the bloating is a common symptom.

I have been to the Rochester Mayo Clinic and I can attest that the Gastroenterology staff are familiar with this disease and it’s progression. The treatment for MP is limited and there is no cure but it is treatable and it is very reassuring to know how it is affecting your Mesentery and to know whether your symptoms are being caused by the MP or something else. Although I was not having symptoms when I visited the Rochester Mayo Clinic, I found out everything I needed to know. The doctor actually went over my CT scans with me and explained everything he was looking at. This is the first time a doctor actually looked at my CT scans other than at the ER. My local doctors read the CT written report and that was it.

I have borrowed the following paragraph from one of our Moderators ( @kanaazpereira ) as I think she says it so well: “If it gives you any reassurance, I’d like to mention that Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2017-2018 by U.S. News & World Report. If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here”: http://www.mayoclinic.org/appointments

Can you tolerate Prednisone? This is usually the first line of defense once diagnosed with symptoms. Please see attached information: http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/sclerosing-mesenteritis-care-at-mayo-clinic/ovc-20322161

Looking forward to your response and best wishes to you.
@vdouglas

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Hi Von, I'm a newbie here and newly diagnosed but have a long history of abdominal surgeries. I'm located in Reno and read that you are in Vegas. Have you found a doc there that is knowledgeable in MP? I can't get treatment here but could jump on a plane if there is a doc you can recommend in Vegas

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My CT showed MP with lymph nodes. Does anyone know what the doctors will do for me?

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@jarnold246

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?

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Hi J, From what I've read neither EUS nor colonoscopy can see or diagnose MP. Personally I've had 6 EUS in the last 10 years, some with ERCP and they never mentioned seeing MP. But just last week on my annual MRI a new radiologist noticed the MP and also said he could see it on scans (MRI or CT) going back at least 6 years. Your doc probably wants to rule out pancreatitis, stones, etc.

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@steve_b

Hi J, From what I've read neither EUS nor colonoscopy can see or diagnose MP. Personally I've had 6 EUS in the last 10 years, some with ERCP and they never mentioned seeing MP. But just last week on my annual MRI a new radiologist noticed the MP and also said he could see it on scans (MRI or CT) going back at least 6 years. Your doc probably wants to rule out pancreatitis, stones, etc.

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Thank you. Forgive my ignorance but what is a eus?

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@paulalee

Thank you. Forgive my ignorance but what is a eus?

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Thanks Steve. I'm in the medical field, formerly an MRI tech and I never heard of mp, but have done plenty of mesentary scans. Im sure that is what the doc is looking for, stones etc…. I just hate the vagueness when some docs talk to you,but usually that seems to come when they don't quite know what is going on rather than saying they don't really know.

@paulalee EUS is an endoscopic ultrasound. I'm sorry I should have explained that in my post.

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@jarnold246

Thanks Steve. I'm in the medical field, formerly an MRI tech and I never heard of mp, but have done plenty of mesentary scans. Im sure that is what the doc is looking for, stones etc…. I just hate the vagueness when some docs talk to you,but usually that seems to come when they don't quite know what is going on rather than saying they don't really know.

@paulalee EUS is an endoscopic ultrasound. I'm sorry I should have explained that in my post.

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Thanks again, I'm new to all this and a bit scared.

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Hello Everyone!

I was just diagnosed with Mesenteric Panniculitis last week. I had been having abdominal pain also with other symptoms the past 8 weeks that had been worseing over time. I had gone to my PCP and also my G.I. and I didn't feel they were listening to me. They kept talking about my acid reflux even though mine has been well controlled for several years now. I ended up going to the ER and had a CT scan which confirmed the diagnosis. I have since showed the findings to my GI doctor, and he is now taking things more seriously. I'm still pending the results of my blood work that's testing my inflammatory markers. Currently my doctor wants to wait the next 4-6 weeks to see if it will magcially go away on it's own. Will repeat the CT scan at that time, and will most likely do a biopsy. I've been inm so much pain and I'm hardly eating right now. I have lost 10 lbs in a little under a week. Don't get me wrong the wightloss is a good thing, but not in this scenario. My GI wants to hold off on steroids for the time being and has given me Tramadol, Librax, and Hyoscyamine Sulfate to see if it will help with the abdominal pain. A little back story on me, I have Celiacs Disease and my mother was recently diagnosed with RA. From what I've read, people with auto immune disorders in their family can mean you have a higher liklihood of contracting MP. I feel like I need to vent since I'm pretty worried. Based on what I've described, does this sound like a good medical plan for the illness or should I seek a second opinion with another doctor? I'm only 29, and not sure how many other people in my age group have been doagnosed with this.

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