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.

kimh | @kimh | Aug 26, 2019
In reply to @hopeful33250 "@jarnold246 You have been through a lot. I hope you get the answers you need and..." + (show)
@hopeful33250

@jarnold246 You have been through a lot. I hope you get the answers you need and begin to feel better at least. Many of us on Connect have had hard-to-diagnose health problems and have spent years trying to get an answer. When you finally get the answer it feels so good. Hang in there!

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Yes, and please share any knowledge that you learn! This site has helped me immensely when it comes to trying different medications (most of them, I had never even heard about before!).

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kimh | @kimh | Aug 26, 2019
In reply to @pcfromfm "Morning all! Doctors agreed when I was diagnosed that I probably have had this since I..." + (show)
@pcfromfm

Morning all! Doctors agreed when I was diagnosed that I probably have had this since I was young. I had hypothermia as a young person and developed terrible gut issues after that. In and out of hospital at least 3 times a year. But auto immune diseases run in my family like crazy as well. I’m old now -turn 70 this year!-and I’ve learned to live a pretty full life with it, juggling factors that effect quality. But you are sure correct kimh- being diagnosed and knowing some of what this disease is all about - very comforting. Doctors kept telling me for years that if I would only leave a less stressful life I would be fine, if I stopped doing such and such then -. Took many years to end up finding out that it wasn’t in my head! 😊

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It's the worst, when you actually start questioning your sanity! Been there and done that too! I am still off work and my job is a pretty stressful one, so I don't know what will happen when my insurance (sick leave) runs out! Another stressor!! I have wondered if I wasn't born with this disease with the symptoms laying dormant until that big bad fall on black ice! BTW, 70 is a spring chicken!!!

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1 reply
kimh | @kimh | Aug 26, 2019
In reply to @musicflowers4u "These posts leave me to realize it’s possible for MP To return probably even these three..." + (show)
@musicflowers4u

These posts leave me to realize it’s possible for MP
To return probably even these three years post cancer surgery. It’s touch and go day by day. Current diagnosis is IBS. Thanks for all of your posts.

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I was in remission for two years and then it reared it's ugly head again! Currently, I have been battling this relapse for two years. I'm having great difficulty getting off the prednisone, though I am on a low dose. Most people here would suggest to keep stress levels low and I would agree 100%!

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2 replies
PCfromFM | @pcfromfm | Aug 26, 2019
In reply to @kimh "It's the worst, when you actually start questioning your sanity! Been there and done that too!..." + (show)
@kimh

It's the worst, when you actually start questioning your sanity! Been there and done that too! I am still off work and my job is a pretty stressful one, so I don't know what will happen when my insurance (sick leave) runs out! Another stressor!! I have wondered if I wasn't born with this disease with the symptoms laying dormant until that big bad fall on black ice! BTW, 70 is a spring chicken!!!

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Lol!🤣I’m not sure about that kimh. I sure agree with the idea that stress upsetting all. My motto has become “keep smiling, keep moving.” Being positive, developing good coping skills and becoming creative has helped I’m sure!❤️

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PCfromFM | @pcfromfm | Aug 26, 2019
In reply to @kimh "I was in remission for two years and then it reared it's ugly head again! Currently,..." + (show)
@kimh

I was in remission for two years and then it reared it's ugly head again! Currently, I have been battling this relapse for two years. I'm having great difficulty getting off the prednisone, though I am on a low dose. Most people here would suggest to keep stress levels low and I would agree 100%!

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👍❤️

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BILLinDC | @billindc | Aug 26, 2019
In reply to @gussypup333 "Does anyone know of any ny doctors who can treat this?" + (show)
@gussypup333

Does anyone know of any ny doctors who can treat this?

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Darrell Pardi at Mayo in Rochester

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2 replies
elle1233 | @elle1233 | Aug 26, 2019

Seems like the mesentery and it's problems are a relatively new area. I have a different type problem (well they don't think it's a problem) with my mesentery, so i won't go on here other than to say that.

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1 reply
PCfromFM | @pcfromfm | Aug 27, 2019
In reply to @elle1233 "Seems like the mesentery and it's problems are a relatively new area. I have a different..." + (show)
@elle1233

Seems like the mesentery and it's problems are a relatively new area. I have a different type problem (well they don't think it's a problem) with my mesentery, so i won't go on here other than to say that.

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Hi elle1233, does seem like they are discovering much about this organ. I am thankful for sure. Please feel free to share with us. Although we have some issues/concerns that are similar, many seem very mysterious. As kimh said earlier-we learn by sharing. 👍❤️

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 27, 2019
In reply to @musicflowers4u "These posts leave me to realize it’s possible for MP To return probably even these three..." + (show)
@musicflowers4u

These posts leave me to realize it’s possible for MP
To return probably even these three years post cancer surgery. It’s touch and go day by day. Current diagnosis is IBS. Thanks for all of your posts.

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We learn so much from each other, @musicflowers4u, at Connect.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 27, 2019
In reply to @billindc "Darrell Pardi at Mayo in Rochester" + (show)
@billindc

Darrell Pardi at Mayo in Rochester

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Hello All:
As @billindc mentioned his Mayo doctor's name, I thought you might find this information helpful. It is an introduction to Dr. Pardi and gives some helpful information about his research and experience.
https://www.mayo.edu/research/faculty/pardi-darrell-s-m-d/bio-00086058?_ga=2.259229898.1521299914.1563835831-1221957091.1534862430
Here is a video about a patient at Mayo who had a similar problem. As she will report, Dr. Pardi was also her doctor as well.

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