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.

dementorshoes | @dementorshoes | Mar 13, 2019
In reply to @robinbeth6 "The doctor today that right back pain can't be part of any stomach issue!!!" + (show)
@robinbeth6

The doctor today that right back pain can't be part of any stomach issue!!!

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On my first ER trip, I was misdiagnosed with a pulled muscle in my back and sent home. An MRI showed no change in the crappy disc issues my neurosurgeon is already well aware of. I had emergency surgery 2 years ago on my back for Cauda Equina Syndrome. A day and a half later, during a tearful phone call to the PA on-call with my neorosurgeons office, I was told to call 911, this is NOT a pulled muscle nor is it your spine. She knew of my AAA last year and was worried about one of the arterial stents migrating and causing the intense abdomin and back pain. That visit's CT showed the MP. First GI was downright cocky about claims to have treated this dozens of times. I didn't need a doctor whose ego was more important than my health. My 2nd GI, bless him, has referred me out for help (No go at Mayo so hoping for Stands or Cleveland clinic) because, in much appreciated candor stated "I don't know how to treat this, so we'll send you to someone who does". I promise you that you know as much about MP, courtesy of this board and Google, as your primary. Keep looking. And hang in there.

REPLY
2 replies
robinbeth6 | @robinbeth6 | Mar 13, 2019
In reply to @dementorshoes "On my first ER trip, I was misdiagnosed with a pulled muscle in my back and..." + (show)
@dementorshoes

On my first ER trip, I was misdiagnosed with a pulled muscle in my back and sent home. An MRI showed no change in the crappy disc issues my neurosurgeon is already well aware of. I had emergency surgery 2 years ago on my back for Cauda Equina Syndrome. A day and a half later, during a tearful phone call to the PA on-call with my neorosurgeons office, I was told to call 911, this is NOT a pulled muscle nor is it your spine. She knew of my AAA last year and was worried about one of the arterial stents migrating and causing the intense abdomin and back pain. That visit's CT showed the MP. First GI was downright cocky about claims to have treated this dozens of times. I didn't need a doctor whose ego was more important than my health. My 2nd GI, bless him, has referred me out for help (No go at Mayo so hoping for Stands or Cleveland clinic) because, in much appreciated candor stated "I don't know how to treat this, so we'll send you to someone who does". I promise you that you know as much about MP, courtesy of this board and Google, as your primary. Keep looking. And hang in there.

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Does anyone know any drs.in new York?

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musicflowers4u | @musicflowers4u | Mar 20, 2019
In reply to @dementorshoes "On my first ER trip, I was misdiagnosed with a pulled muscle in my back and..." + (show)
@dementorshoes

On my first ER trip, I was misdiagnosed with a pulled muscle in my back and sent home. An MRI showed no change in the crappy disc issues my neurosurgeon is already well aware of. I had emergency surgery 2 years ago on my back for Cauda Equina Syndrome. A day and a half later, during a tearful phone call to the PA on-call with my neorosurgeons office, I was told to call 911, this is NOT a pulled muscle nor is it your spine. She knew of my AAA last year and was worried about one of the arterial stents migrating and causing the intense abdomin and back pain. That visit's CT showed the MP. First GI was downright cocky about claims to have treated this dozens of times. I didn't need a doctor whose ego was more important than my health. My 2nd GI, bless him, has referred me out for help (No go at Mayo so hoping for Stands or Cleveland clinic) because, in much appreciated candor stated "I don't know how to treat this, so we'll send you to someone who does". I promise you that you know as much about MP, courtesy of this board and Google, as your primary. Keep looking. And hang in there.

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You were fortunate to have a doctor admit not knowing how to treat but willing to refer to someone who does. I went for seven years before someone diagnosed my Carcinoid cancer which was the underlying disease of my MP.

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2 replies
robinbeth6 | @robinbeth6 | Mar 21, 2019
In reply to @musicflowers4u "You were fortunate to have a doctor admit not knowing how to treat but willing to..." + (show)
@musicflowers4u

You were fortunate to have a doctor admit not knowing how to treat but willing to refer to someone who does. I went for seven years before someone diagnosed my Carcinoid cancer which was the underlying disease of my MP.

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Im so sorry to hear that.I hope you are feeling better!!

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dementorshoes | @dementorshoes | Mar 22, 2019
In reply to @musicflowers4u "You were fortunate to have a doctor admit not knowing how to treat but willing to..." + (show)
@musicflowers4u

You were fortunate to have a doctor admit not knowing how to treat but willing to refer to someone who does. I went for seven years before someone diagnosed my Carcinoid cancer which was the underlying disease of my MP.

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I'm very sorry and hope your health improves. I'm currently back in the hospital, and simply over it. Another CT, 2 ultrasounds, and another MRCP, all show the MP is still present and unchanged. For added fun, I had a blockage in NY small intestine. After a pissing contest between the surgeon and internal med doc, they inserted an NG tube (that's out, thank goodness). Cancer markers in my blood work were mentioned. But that's all, just mentioned. I'm hoping that at Shands, something can be done beyond treating pain. I'm extremely frustrated, but that could be because I'm sick of Jello.

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fabd | @fabd | Mar 28, 2019

Hi, I'm so glad I found this place, almost impossible to find people with stories about MP, I wanted to share mine!
Last week I had an episode of pain and went into ER. They did a CT scan and confirmed it was appendicitis, and on the same day I got it removed.
I went back to the hospital yesterday to get my exam results and It says:
"Densification of mesenteric fat with small lymph nodes, non-specific, but suggesting mesenteric panniculitis".
I quickly went searching for it and ended up finding you guys. My doubt is,on the same CT report it says also "Densification of fat near the appendix" related to my appendicitis condition, I was wondering it those things could be related or if it could cause any kind of misdiagnose.
The exam says I dont have any enlarged lymph nodes in my abdomen or pelvic area, I'm a 35 year old man and never had any symptoms of MP. I'm trying to find a doctor who specializes on it, but I live in Brazil and so far I couldn't.
Thank you!

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PCfromFM | @pcfromfm | Apr 9, 2019

Welcome dinayo! You are in the right spot-we are all in this together! I’m from AB Canada and it good to have you with us!

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1 reply
kimh | @kimh | Apr 9, 2019

Hello @dynayo,
Consider yourself connected! I have learned a lot on this site from fellow friends with the same rare disease. I am from Canada, but this is quickly becoming an international site! I have been diagnosed (through numerous CT scans and surgical biopsy) since June 2014. I went into remission for a couple of years, but relapsed in August 2017. Are you on any treatment plan?

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kimh | @kimh | Apr 9, 2019
In reply to @pcfromfm "Welcome dinayo! You are in the right spot-we are all in this together! I’m from AB..." + (show)
@pcfromfm

Welcome dinayo! You are in the right spot-we are all in this together! I’m from AB Canada and it good to have you with us!

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Hello @pcfromfm ,
How have you been doing? This site got a little quiet for awhile!

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1 reply
PCfromFM | @pcfromfm | Apr 9, 2019
In reply to @kimh "Hello @pcfromfm , How have you been doing? This site got a little quiet for awhile!" + (show)
@kimh

Hello @pcfromfm ,
How have you been doing? This site got a little quiet for awhile!

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Hi KimH I’m good. Struggle a little with Spring! I love it but it doesn’t love me! A little havoc in the gut but -keep moving, keep smiling! How are you!?

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