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

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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@skywave

I’m a 54yo male diagnosed with MP in 2015 and 2016, with health problems post acute MP. I live in NH. Having hard time finding medical professionals who know how to treat MP. I’m current condition is in a weaken state with poor B12 and iron. Unable to raise either by supplements which cause severe bloating and pain or diet. It’s taking a toll on a normal life.

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Welcome@skywave to our group. You share a common problem, with this rare disease. We are from around the world and yet can connect on a good level with crazy symptoms, possible causes and a plethora of bits to help. We understand your worry, your concerns and frustrations. We share them all. I have found there is always someone who can relate and thus help to start progress to better health. Suggestions above from @vdouglas as a perfect example. I have taken solice in the idea of at least we are in this with an understanding group. Welcome!

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@shareie

I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare

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Do you still have the support group? thank you!

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@shareie

I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare

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Yes we are here Mr Rick! An interesting and interested group of warriors who share as much as we can about this crazy illness!! How are you doing-pls share you experiences!

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@shareie

I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare

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Hello @ricklaff51 , I join @pcfromfm in welcoming you to the Mayo Clinic Connect. Yes the Connect community is still active and ready to listen. As you may already know, we are a group of patients and caring individuals who have experienced the struggles of dealing with Mesenteric Panniculitis or Sclerosing Mesenteritis.
How are you today and what brings you to the Connect?
@vdouglas
von

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@shareie

I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare

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Hi Rick, I add my welcome. The support in the Mesenteric Panniculitis/Sclerosing Mesenteritis group remains active. Glad to have you join us.
Please note that I removed your personal email from your message. Mayo Clinic Connect is a public forum and we recommend not posting your personal contact information to avoid getting unwanted spam.

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Hello all! Just diagnosed with SM on 2/26. Going to see my GP on 3/1. Can remember almost the exact day I acquired it. Came down with a myriad of symptoms. Drs. patted me on my head and told me to go home. 3yrs. later here I am. 36yr. old male Duluth, MN

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@gabrield

Hello all! Just diagnosed with SM on 2/26. Going to see my GP on 3/1. Can remember almost the exact day I acquired it. Came down with a myriad of symptoms. Drs. patted me on my head and told me to go home. 3yrs. later here I am. 36yr. old male Duluth, MN

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Hello @gabrield , I hope you are doing well despite the diagnosis and we all welcome to the Mayo Clinic Connect. We are glad you chose to join the group.

We understand and have experienced many of the struggles all too typical of this disease. Maybe we can help should you have questions.
@vdouglas
(Von)

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Is there any actual difference between SM and SP?

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Hello @gabrield , That is a very good question and one that is not easily explained. SM and SP seem to be used universally and I’m not sure if there is any difference at all in recent terminology. I have read that there are three stages to the disease, and having the first doesn't necessarily mean you will progress to the third stage. Documentation to support this can be found here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2726466/

There is some additional information that could explain the difference between the two. Here is an excerpt of that information: "It can be categorized according to three pathological changes: chronic nonspecific inflammation, fat necrosis and fibrosis[2]. This varied terminology has caused considerable confusion, but the condition can now be evaluated as a single disease with two pathological subgroups. If inflammation and fat necrosis predominate over fibrosis, the condition is known as MESENTERIC PANNICULITIS, and when fibrosis and retraction predominate, the result is RETRACTILE MESENTERITIS. The overall presence of some degree of fibrosis makes the pathological term SCLOROSING MESENTERITIS more accurate in most cases[3]". You can find that information here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2726466/

I hope you are doing well, does this information help?

@vdouglas
(Von)

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Yeah thanks. Talked to my Dr. he acted like it's no big deal, no need to see a specialist or anything. I kind of question that decision.

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@gabrield, yes very common because they don't understand the disease. If you are having symptoms, or not having symptoms, you may want to see a specialist who understands the progression of this disease. Even if it is just for peace of mind knowing what organs, if any, are affected. The Mayo Clinic Gastroenterology Department in Rochester Mn. is well versed in evaluating the disease. Once again, there is no cure, but there is treatment or no treatment at all required if your symptoms are manageable and the disease is not progressing.
I hope you are doing well and best wishes to you. Are you managing alright?
@vdouglas
(Von)

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@gabrield

Yeah thanks. Talked to my Dr. he acted like it's no big deal, no need to see a specialist or anything. I kind of question that decision.

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I understand the frustration, my own PCP had the same comment. He's very clueless and seems not to want to be educated on my condition. I had asked to be referred to a doctor with some experience but he decided on his own to contact top doctor at Dartmouth Hitchcock. He then came back to me regarding a slew of medications for me to try. I had asked him do to my allergy to certain NSAIDS would these affect me, and of course he stated, well I'm not sure. So I was officially diagnosed with MP 1/2016 and still cannot find a medical professional with any education on the subject. I've had 2 severe attacks and 2 minor attacks of MP, hoping never to have another one.

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In New England, we do have some pretty fine medical facilities, but for MP it hasn't been a yellow brick road to knowledge and treatment.

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Hi @skywave,

I moved your post about finding informed practitioners for MP, and combined it with this existing discussion. I did this as I thought the other members in this group would also appreciate your insights.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the conversations by members discussing similar questions and concerns.

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