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.

PCfromFM | @pcfromfm | Aug 26, 2019
In reply to @jarnold246 "Thank you! I am traveling from St Louis MO. I actually work for a highly ranked..." + (show)
@jarnold246

Thank you! I am traveling from St Louis MO. I actually work for a highly ranked academic facility which is why this is so frustrating for me that they can "figure out" what's going on. I was diagnosed with MP last summer via CT but the gi doc I went to said no I dont have the body type for it and looked at the ct and said no he didnt see it. I'm beyond frustrated and really need answers as this is affecting my life. Again thank you and I appreciate any insight!

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Morning @jarnold246-welcome to our group. I’m unsure what “body type” he is referring to and how that can change what was on a CT-? I’ve been diagnosed for many years now and have had a few remissions. But can relapse at anytime. Are you on medication(s)-I May have missed your previous discussions. Are you on a special diet? What symptoms do you usually have? I have found on a day-to-day basis that if I watch my diet, get extra rest and keep stress low, then I am able to enjoy life without extreme medications I need in a flare up. I hope you get help❤️

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kimh | @kimh | Aug 26, 2019
In reply to @jarnold246 "Thank you! I am traveling from St Louis MO. I actually work for a highly ranked..." + (show)
@jarnold246

Thank you! I am traveling from St Louis MO. I actually work for a highly ranked academic facility which is why this is so frustrating for me that they can "figure out" what's going on. I was diagnosed with MP last summer via CT but the gi doc I went to said no I dont have the body type for it and looked at the ct and said no he didnt see it. I'm beyond frustrated and really need answers as this is affecting my life. Again thank you and I appreciate any insight!

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I'm sorry, but I have never heard that you should be a certain body type for this disease! What? I have heard that it is more typical for men in their 60's, but since I am a female who was diagnosed at 49, I guess there are many theories out there as to who can have MP.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 26, 2019
In reply to @kimh "I'm sorry, but I have never heard that you should be a certain body type for..." + (show)
@kimh

I'm sorry, but I have never heard that you should be a certain body type for this disease! What? I have heard that it is more typical for men in their 60's, but since I am a female who was diagnosed at 49, I guess there are many theories out there as to who can have MP.

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Point well taken, @kimh and @pcfromfm. When I read the comment, "I was diagnosed with MP last summer via CT but the gi doc I went to said no I don't have the body type for it and looked at the ct and said no he didn't see it." I felt confused as well.

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1 reply
kimh | @kimh | Aug 26, 2019

Yes, I kind of feel that either you have it or your don't depending on the results of the image. Maybe a better question would be, have you recently had a severe back trauma or abdominal surgery? My GI has said that there is a correlation between these events and MP. For me, I had a bad fall on my back two weeks prior to experiencing my first symptoms of MP.

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1 reply
jarnold246 | @jarnold246 | Aug 26, 2019
In reply to @hopeful33250 "Point well taken, @kimh and @pcfromfm. When I read the comment, "I was diagnosed with MP..." + (show)
@hopeful33250

Point well taken, @kimh and @pcfromfm. When I read the comment, "I was diagnosed with MP last summer via CT but the gi doc I went to said no I don't have the body type for it and looked at the ct and said no he didn't see it." I felt confused as well.

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He pretty much said that because I wasn't over weight that I couldn't have it. I had bariatric surgery in November of 17 and then my gallbladder out on March of 18 then the pain started in July of 18. I had a reread of my CT done and the doc who read it said yeh it's there (meaning the MP) but I would not have called it out on the imaging. It wasn't significant enough I'm assuming. I have read almost all there is to read about it it hink and feel like if the docs at mayo cant figure put what this is, MP or not, then maybe I am just crazy.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 26, 2019
In reply to @jarnold246 "He pretty much said that because I wasn't over weight that I couldn't have it. I..." + (show)
@jarnold246

He pretty much said that because I wasn't over weight that I couldn't have it. I had bariatric surgery in November of 17 and then my gallbladder out on March of 18 then the pain started in July of 18. I had a reread of my CT done and the doc who read it said yeh it's there (meaning the MP) but I would not have called it out on the imaging. It wasn't significant enough I'm assuming. I have read almost all there is to read about it it hink and feel like if the docs at mayo cant figure put what this is, MP or not, then maybe I am just crazy.

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@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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1 reply
PCfromFM | @pcfromfm | Aug 26, 2019
In reply to @kimh "Yes, I kind of feel that either you have it or your don't depending on the..." + (show)
@kimh

Yes, I kind of feel that either you have it or your don't depending on the results of the image. Maybe a better question would be, have you recently had a severe back trauma or abdominal surgery? My GI has said that there is a correlation between these events and MP. For me, I had a bad fall on my back two weeks prior to experiencing my first symptoms of MP.

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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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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 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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Glad to hear that you found an answer, @pcfromfm! It feels good when you get to the right doctor who is willing to look with you for an answer.

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musicflowers4u | @musicflowers4u | Aug 26, 2019

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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2 replies
kimh | @kimh | Aug 26, 2019
In reply to @jarnold246 "He pretty much said that because I wasn't over weight that I couldn't have it. I..." + (show)
@jarnold246

He pretty much said that because I wasn't over weight that I couldn't have it. I had bariatric surgery in November of 17 and then my gallbladder out on March of 18 then the pain started in July of 18. I had a reread of my CT done and the doc who read it said yeh it's there (meaning the MP) but I would not have called it out on the imaging. It wasn't significant enough I'm assuming. I have read almost all there is to read about it it hink and feel like if the docs at mayo cant figure put what this is, MP or not, then maybe I am just crazy.

Jump to this post

You're not crazy, but there is a correlation with abdominal surgeries. I have also had a few, but my MP symptoms began two weeks after a nasty fall on black ice, where I landed on my back.

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