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.

Hi @nnewins, welcome to Mayo Clinic Connect. If you scroll to the top of this page and click digestive health in the headline at that says:

Groups / Digestive Health / Mesenteric Panniculitis or Sclerosing Mesenteritis

You will see in the first blue box that it has a plus sign and the word follow. Once you start following, you will get email updates whenever someone posts to the group.

Have you been diagnosed with Mesenteric Panniculitis or Sclerosing Mesenteritis?

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@amandaa

Hi @nnewins, welcome to Mayo Clinic Connect. If you scroll to the top of this page and click digestive health in the headline at that says:

Groups / Digestive Health / Mesenteric Panniculitis or Sclerosing Mesenteritis

You will see in the first blue box that it has a plus sign and the word follow. Once you start following, you will get email updates whenever someone posts to the group.

Have you been diagnosed with Mesenteric Panniculitis or Sclerosing Mesenteritis?

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Just diagnosed with Sclerosing Mesenteritis. Any physicians in Mid-Atlantic states who know about this condition?

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I have never heard of this disorder. I could read all about it online but I find out so much more from the experience of others. Would you mind describing?

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Hi Donna, I have been working with the Mayo Clinic and this is what I have learned. It is extremely rare and is usually diagnosed by accident by a CT scan MRI while looking for the source of pain or other issues. It's a small mass on the outside of your intestine that is benign. It should not be removed because it has become part of your blood system unless it starts growing and causes a blockage! It generally does not cause any symptoms unless it grows. A lot of people want to blame every issue under the sun on it but more investigation is usually recommended.

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@brandya777

Anybody on here know anything about Mesenteric Panniculitis! I just got a CT Scan diagnosis and not my Dr or anyone knows anything to tell me! Please help!

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I also have just been diagnosed with MP through a CAT scan. My doctor knows very little, being referred to a gastroligist I have pain every morning between 3 and 5 am on the right side stomach very low. When I have my morning bowel movement
The pain or discomfort is gone until next morning...my stools are thinner but a good colour and I have no other symptoms. Can anybody tell me where else I can get information about this. Don’t know where I put my name but it is nancy. Hope someone can help me....

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@nancykeenan

I also have just been diagnosed with MP through a CAT scan. My doctor knows very little, being referred to a gastroligist I have pain every morning between 3 and 5 am on the right side stomach very low. When I have my morning bowel movement
The pain or discomfort is gone until next morning...my stools are thinner but a good colour and I have no other symptoms. Can anybody tell me where else I can get information about this. Don’t know where I put my name but it is nancy. Hope someone can help me....

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I would sure explore all possibilities. Check to see if the MP has changed any in size or intensity. Did your CAT scan mention any other issues such as diverticulosis? Let your physician help you figure things out.

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@constancelee

I would sure explore all possibilities. Check to see if the MP has changed any in size or intensity. Did your CAT scan mention any other issues such as diverticulosis? Let your physician help you figure things out.

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Thank you...only thing it showed was diverticulosis which I knew. There was no mass atleast that was all they said. I am waiting for my referral to a gastrologist

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It is my experience that diverticulosis is very painful even though not necessarily serious. My remedy is Metamucil and a heating pad as needed but everyone is different.

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@constancelee

It is my experience that diverticulosis is very painful even though not necessarily serious. My remedy is Metamucil and a heating pad as needed but everyone is different.

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A heating pad does help. I will wait for the gastro talk to see what he thinks. Hope I get the appt. soon. Thx for your response and I will let you know...

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My husband as been recently diagnosed with mesenteric panniculitis- after more test than I can name Mayo figured it out- he’s started meds but really haven’t said how long he’ll have to take them? His main symptom is severe bloating which is now affecting his breathing, Does anyone else have these issues?

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