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

@jacques101

Hi all, not sure if this group is still active.
I've been diagnosed with Mesenteric Panniculitis (CTS) last December, following 12 months of trying to find foods that I might be allergic to. I'm from Montreal QC, and not sure I'm welcome here, but I haven't found any sites or forums in Canada on this rare disease. Anyway, so I have pains (sometimes severe) but mostly, I feel bloated and nausea. I saw my GP, who told me he read about this in university, but had seen it, and referred me to a Gastro-Enterologist, who's sending me for a colonoscopy, and a gastroscopy in three weeks.
My question: Since last Saturday Feb 23, I feel like I have several large heartbeats in my stomach, does this sound familiar to anyone?

Thank you in advance for your answers/help
Jacques

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I do feel that! I've said it before and people looked at me like I was crazy!

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@brandya777

Anybody on here know anything about Mesenteric Panniculitis! I just got a CT Scan diagnosis and not my Dr or anyone knows anything to tell me! Please help!

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Umm….welcome to the club?!?! I was diagnosed with MP in 2014 after a bad fall on black ice. After being put on Prednisone for 6 months (that medication has it's own evils!), I went into remission until August 2017. Since August, I have been on Prednisone and Azathioprine (to settle my immune system down) and tamoxifen. I have definitely been battling to get back to remission, but it has been a tough road. Are you feeling any symptoms?

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@kimh

Umm….welcome to the club?!?! I was diagnosed with MP in 2014 after a bad fall on black ice. After being put on Prednisone for 6 months (that medication has it's own evils!), I went into remission until August 2017. Since August, I have been on Prednisone and Azathioprine (to settle my immune system down) and tamoxifen. I have definitely been battling to get back to remission, but it has been a tough road. Are you feeling any symptoms?

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Last Sunday I was diagnosed with Mesenteric Panniculitis and a supraumbilical midline hernia through CT scan! The ER doctor had to use Google to tell me what I had because nobody in the hospital has ever heard of it! So all I've been doing is reading up on it but still don't know what to do! The ER Dr told me I need a HUGE diet change from what she read. I've been complaining about stomach pain for so long with my Dr and told him I though I had a hernia and all he did was just give me meds for ulcers. I throw up all the time, I'm constantly so so bloated, I can't eat very much because I get full so fast or food makes me feel nauseated. It's been a rough road so far for so very long 😣

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@brandya777

Anybody on here know anything about Mesenteric Panniculitis! I just got a CT Scan diagnosis and not my Dr or anyone knows anything to tell me! Please help!

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Well, I don't know what diet you are on, so I can not comment. Personally, I limit carbs and spicy food and I seldom eat out, so fast food is almost non existent for me. I'm not sure that my diet makes any difference, except for maybe tolerating the Prednisone. I hope this helps!

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Anybody on here know anything about Mesenteric Panniculitis! I just got a CT Scan diagnosis and not my Dr or anyone knows anything to tell me! Please help!

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@kimh

I'm not sure how to do that…but if you follow the 'chain' of conversations, I think you will find some common threads with this disease. There is very little research on this disease unfortunately. I have had numerous ct's and a surgical biopsy to diagnose me.

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Thank you! I need the biopsy next to confirm! My primary Dr acts like this all no big deal. Which is super ANNOYING 😡

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@pcfromfm

Welcome Brandy! How are you feeling? We are wonderful group from so many places with suggestions and much supportive help. Thank you for joining us!

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Thank you! I'm just so happy to find people are going through what I am! I haven't felt good in so long and still dont 😣

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@brandya777

Thank you! I need the biopsy next to confirm! My primary Dr acts like this all no big deal. Which is super ANNOYING 😡

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….until he gets it!!!

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@brandya777

Thank you! I'm just so happy to find people are going through what I am! I haven't felt good in so long and still dont 😣

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If you are on the proper meds, it should be helpful. In my case, it has become chronic. Good days and not so good days…

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@kimh

If you are on the proper meds, it should be helpful. In my case, it has become chronic. Good days and not so good days…

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Same with mine.

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@kimh

….until he gets it!!!

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Oh my Brandy, careful what you wish for. I went in for a biopsy (lapro) and ended up with a 12 inch incision and a 5 day all inclusive at the hospital. He had a hard time finding it and figured he’d do a resection anyway. Thank God he decided against that! He would have done more damage. So I had all that fun for a simple biopsy because people in NE have never heard of SM. Frustrating.

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@constancelee

Oh my Brandy, careful what you wish for. I went in for a biopsy (lapro) and ended up with a 12 inch incision and a 5 day all inclusive at the hospital. He had a hard time finding it and figured he’d do a resection anyway. Thank God he decided against that! He would have done more damage. So I had all that fun for a simple biopsy because people in NE have never heard of SM. Frustrating.

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Morning! I agree. I had a team of Doctors at the University Hospital and they told me not to have a biopsy. I didn’t need the trauma to my system to diagnose. It would cause many more issues. I had “a perfect halo” on the CT. They mentioned it to me twice so I have not done that. Hugs and be careful! Happy Holidays all! ❤️

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