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

@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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@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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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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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 @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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@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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@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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April is a tough month for sure! I just took some pain medication now! Anyway, I am very slowly weaning off the steroids (story of my life!) and hopefully, I won't relapse again. It is slow going for sure. My doctor has also upped the azathioprine while I wean down on the steroids. I'm hoping that we have found the right 'cocktail' this time. I am also hopeful that April's weather begins to calm down!! Like you, I keep smiling and forever optimistic!

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@kimh

April is a tough month for sure! I just took some pain medication now! Anyway, I am very slowly weaning off the steroids (story of my life!) and hopefully, I won't relapse again. It is slow going for sure. My doctor has also upped the azathioprine while I wean down on the steroids. I'm hoping that we have found the right 'cocktail' this time. I am also hopeful that April's weather begins to calm down!! Like you, I keep smiling and forever optimistic!

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❤️👍😊

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Hey everyone. Hoping y'all are all doing well, or at the very least, hanging in there. Another 2 hospital stays under my belt, but can only partially blame MP, at least I think. Important questions to ask everyone. Has anyone else had an issue with malabsorption? Thanks to the constant nausea, which I try to control by grazing (simply snacking throughout the day instead of 3 full meals and really helps) as opposed to taking meds for it, my appetite is rarely there. Some weight loss and bowel movement issues (stools ranging from watery diarrhea to an oily sludge) are common symptoms. My other question, about that which could possibly be related to the malabsorption, is about fainting or blacking out. Anyone else experiencing anything like this? I've had 3 'episodes' of this occurring with an awesome little laundry list of injuries (a concussion, 2 fractured vertebrae, bruised sternum and ribs, and a spectacular black eye, divided up between the 3 'episodes') to draw the doctors' attention away from MP for a bit and focus it on something they can confidently treat, and actually spell. Y'all might even think I'm making it up, as pitifully gloomy as it will sound, but 2nd fall's MRI confirming concussion and checking for any neck injuries, discovered a brain aneurysm. I wish it were just the plot of a sad Lifetime network movie, but it's true. The aneurysm is large enough to be operable, but one who's dimensions won't be easy to fix with a routine clip or coil (because, like MP, I like the complicated, rare shit). All this added fun, and I insist that MP deserves the focus and I beg for it to be addressed first, assuring the doctors that the abdominal pain from it wins out over everything else. So, a novel later (apologies), I'm hoping y'all can help with any similarities you may have experienced with these 'episodes', and malabsorption. Thanks.

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@dementorshoes

Hey everyone. Hoping y'all are all doing well, or at the very least, hanging in there. Another 2 hospital stays under my belt, but can only partially blame MP, at least I think. Important questions to ask everyone. Has anyone else had an issue with malabsorption? Thanks to the constant nausea, which I try to control by grazing (simply snacking throughout the day instead of 3 full meals and really helps) as opposed to taking meds for it, my appetite is rarely there. Some weight loss and bowel movement issues (stools ranging from watery diarrhea to an oily sludge) are common symptoms. My other question, about that which could possibly be related to the malabsorption, is about fainting or blacking out. Anyone else experiencing anything like this? I've had 3 'episodes' of this occurring with an awesome little laundry list of injuries (a concussion, 2 fractured vertebrae, bruised sternum and ribs, and a spectacular black eye, divided up between the 3 'episodes') to draw the doctors' attention away from MP for a bit and focus it on something they can confidently treat, and actually spell. Y'all might even think I'm making it up, as pitifully gloomy as it will sound, but 2nd fall's MRI confirming concussion and checking for any neck injuries, discovered a brain aneurysm. I wish it were just the plot of a sad Lifetime network movie, but it's true. The aneurysm is large enough to be operable, but one who's dimensions won't be easy to fix with a routine clip or coil (because, like MP, I like the complicated, rare shit). All this added fun, and I insist that MP deserves the focus and I beg for it to be addressed first, assuring the doctors that the abdominal pain from it wins out over everything else. So, a novel later (apologies), I'm hoping y'all can help with any similarities you may have experienced with these 'episodes', and malabsorption. Thanks.

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Morning Dementorshoes! No idea if I have malabsorption issues. Although when I don’t have diarrhea I start to worry😊. So I have taken B’s, and other water-solvable vitamins on an irregular basis for years. Now I also take calcium and D, as well as Mg. So maybe that’s helped. I do have low blood pressure regularly and energy to match. Our bodies and interactions are so complicated, I don’t cross off any “complications”. I sure am hoping your aneurysm is taken care of easily friend, I send all good thoughts. I avoid surgery as much as possible having found my gut does not like anything that stressful. So I’m doubling those good thoughts for you! Please let us know how it goes-? ❤️

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Hi I’m a 67 y old woman with MP. Been on prednisone for about 5 mths, early last year. Also still on tomoxefen. Had to come off prednisone because it wasn’t good for my osteoporosis which I found out I had during the process. P makes it worse! Grew a little plumper in the face due to P, but not too bad. When coming off P I had to reduce amount very slowly over 6 weeks, as to not experience bad pain. ( although I had one week of bad hip pain). I am only on tomoxefen now, (although I am having a Prolia injection every 6 mths…this takes calcium from blood and puts it into bones). Generally stomach pain is not too bad…. I try and reduce any stress. Only other medication i take is calcium tablets and vit D prescribed by dr. I am under an gastroenterologist whom I see twice a year. He doesn’t know a real lot about MP. I live in Aussi. All the best, hope this helps.

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