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.

@billindc

Darrell Pardi at Mayo in Rochester

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Hi @billindc,

I’m thrilled to see you back! I so appreciate you joining in with your experience and support for others – thank you!

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@kimh

Hi @elle, who is the Irish doc?

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Dr. Calvin Coffey.
Here is a link to a TED talk he did, I think those of you with Mesenteric problems would find it very interesting. He has great visuals, and also talks about how even now, Doctors are being taught incorrect information about the mesentery.
* * I just had to take off the link to the Ted talk and the article below because I am not allowed to post them.
The talk is very good - if you search his name and Mesentery it should come up - I think it's about the only video on you tube about the mesentery!

Here is a link to a recent review article he wrote.

Sorry I couldn't post the link: try searching Dr Coffey and "The mesentery: structure, function, and role in disease"

I just saw this comment under his you tube video:
"I just heard of him, but it took 47 years for me to be diagnosed with a twisted mesenteric root. I have been in chronic pain my whole life."

I am a scientist, and approach this problems with that mindset. From my limited research, it seems that that very little is known about pathology of the mesentery, except for a definitive problem like panniculitis. Given that, it seems premature to me if someone has an abnormality with it, and is also symptomatic to just dismiss it as a cause or contribution. There really isn't any research. I also wonder if twisting or structural abnormalities are even reported sometimes, because it might not be what the radiologist is looking for (i.e. if someone has abdominal pain, they would likely focus on the bowels and more 'well known organs" . Just some thoughts.

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I just watched the TED talks. Thank-you for this information...I will be discussing this with my specialist today. My concern is that with so little research being done, do we know if MP will develop into something more ominous?

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@elle1233

Dr. Calvin Coffey.
Here is a link to a TED talk he did, I think those of you with Mesenteric problems would find it very interesting. He has great visuals, and also talks about how even now, Doctors are being taught incorrect information about the mesentery.
* * I just had to take off the link to the Ted talk and the article below because I am not allowed to post them.
The talk is very good - if you search his name and Mesentery it should come up - I think it's about the only video on you tube about the mesentery!

Here is a link to a recent review article he wrote.

Sorry I couldn't post the link: try searching Dr Coffey and "The mesentery: structure, function, and role in disease"

I just saw this comment under his you tube video:
"I just heard of him, but it took 47 years for me to be diagnosed with a twisted mesenteric root. I have been in chronic pain my whole life."

I am a scientist, and approach this problems with that mindset. From my limited research, it seems that that very little is known about pathology of the mesentery, except for a definitive problem like panniculitis. Given that, it seems premature to me if someone has an abnormality with it, and is also symptomatic to just dismiss it as a cause or contribution. There really isn't any research. I also wonder if twisting or structural abnormalities are even reported sometimes, because it might not be what the radiologist is looking for (i.e. if someone has abdominal pain, they would likely focus on the bowels and more 'well known organs" . Just some thoughts.

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Hi @elle1233,
I see that you wanted to share link to information to share with fellow members. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post were not spam. Please allow me to post them for you.

- Dr. Calvin Coffey's TED talk https://youtu.be/pP-h001GyP8
- The mesentery: structure, function, and role in disease by J Calvin Coffey and D Peter O'Leary, PhD (2016) https://www.researchgate.net/publication/309040884_The_mesentery_structure_function_and_role_in_disease

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@kimh

I just watched the TED talks. Thank-you for this information...I will be discussing this with my specialist today. My concern is that with so little research being done, do we know if MP will develop into something more ominous?

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Glad you found it helpful. Well, it seems there has been very little to no research done on the mesentery, let alone problems with it. Fortunately, it looks like that is changing, but that takes time. At least it's happening. I had never heard of MP until I came on this site, I started looking into the mesentery because of my twisted one :). Of course there are no studies at all on that. The mesentery is chock full of nerves and blood vessels so makes sense to me that it could be a source of pain/problems itself, and right now that is overlooked, unless you have MP where you have a mass (i.e something visible).

My current doc says my problem can't be the mesentery because some people have twisting/torsion and don't have pain or problems. As you said, there is no research on the issue, so do they really know? Maybe some people do. Or eventually do. He says they only worry if it gets bad enough to cause your small instestine to be blocked or inflamed, but maybe it could progress to that. Probably a lot of people (or docs) never even knew someone with pain had abnormalities in the mesentery because they probably don't look to it as a source of problems. So, while my doc doesn't think mine is contributing to my problems (he could be right, but since no cause can be found.. I'm going to continue looking into the mesentery, if nothing else, I'll learn something :).

I just read a fascinating case study ( I could put the link if anyone is interested). Interesting how I found it - I did a google search for one of my diagnoses: reactive fovealor hyperplasia (stomach) , and one of the first things that came up was a woman who had this, and turns out her problem was the 3 main vessels to the mesentery were blocked! So the origin of her problem was the mesentery.

Let me know what your specialist says!

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Please send me the link! My specialist is sending me for another ct to see if the disease has progressed at all. He does not think that I have a twisted mesentery. He said that would have shown up on my previous ct scans. I seem to be relapsing again, unfortunately. After two years, I really want to get off of Prednisone. If I am relapsing, we will have to blast the MP with a higher Prednisone dose. Exactly what I don't want!

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I'm not allowed to post links yet, but the paper is called "A gut feeling you should Never Ignore - in Gastroenterology, but when I search for that it doesn't come up.. a lot of things about intuition 🙂 I searched for reactive foveolar hyperplasia and mesentery and it came up. In this case the has mesentery ischemia that ultimately affected her stomach. Seems to me it's possible for there to be ischemia to the mesentery that may hasn't caused any ischemic changes in another organ yet but causes symptoms. This would need to be diagnosed by a special CT scan of the arteries.

Might be something to ask about if your CT scan doesn't show anything.

Keep me posted!
I need to go back up into the thread to find out what kind of symptoms you are having. I'm new here!

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@colleenyoung

Hi @elle1233,
I see that you wanted to share link to information to share with fellow members. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post were not spam. Please allow me to post them for you.

- Dr. Calvin Coffey's TED talk https://youtu.be/pP-h001GyP8
- The mesentery: structure, function, and role in disease by J Calvin Coffey and D Peter O'Leary, PhD (2016) https://www.researchgate.net/publication/309040884_The_mesentery_structure_function_and_role_in_disease

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Thanks a lot of doing this, Colleen! I think the people here with mesenteric problems will find the video and article interesting (and even those without! ) . A little message did come up and explain the link posting policy when I tried to post it, it's understandable.

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Anyone get diarrhea as a symptom?

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