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

@lisas444

Hi JimmyMac –

We have 58 people in there now as Erin from this Mayo site joined up with us last week and I added her to it. We are on Facebook and a SM/MP medical group. It’s a closed/secret group so we can all talk and discuss freely about meds, pain, bowel issues, support, venting, laughter, etc. One of my daughter’s docs is in our group as well. My kiddo is currently back in patient on Saturday and still in unfortunately. My name is Lisa Schwart and I am on Facebook, in Tulsa, Oklahoma. If you give me your full name as well and City I can find you and add you as a friend. You aren’t able to “search” the SM group as we have it locked down specifically for everyone’s privacy. I’ve been putting together a database for each person with their doc names in each state etc as a resource for everyone as well! 🙂

Lisa

Jump to this post

Brandy Adair
Mesa, Az
Please add me to this group as I was just diagnosed via CT scan last sunday!

REPLY

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.

REPLY

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!

REPLY
@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

Jump to this post

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

REPLY

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!

REPLY
@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.

Jump to this post

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

REPLY
@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!

Jump to this post

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 😣

REPLY
@brandya777

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

Jump to this post

….until he gets it!!!

REPLY
@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 😣

Jump to this post

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…

REPLY
@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…

Jump to this post

Same with mine.

REPLY
@kimh

….until he gets it!!!

Jump to this post

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.

REPLY
@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.

Jump to this post

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! ❤️

Liked by constancelee

REPLY

From what I've read I just though you had to get that done to confirm diagnoses and to rule out any other underlying issues???

REPLY

A ct scan is usually enough to diagnose. In my case, my inflammations grew to sizes over a quarter, in less than a week. It was because of this growth that I ended up having a surgical biopsy to rule out lymphoma (which it did thankfully!).

REPLY

Have you been tested for Alpha-1 Antitrypsin Deficiency disease? It's a rare inherited disease that affects the liver & lungs. I have Alpha-1 & I'm liver affected & my sibling is lung affected. Panniculitis is a subtype autoimmune disease of liver patients with affected Alpha-1. There is no cure for Alpha-1 other than undergoing a liver and/or lung transplant. There is a treatment available for mesenteric panniculitis which is corticosteroids such as azathioprine (Imuran).

REPLY
Please login or register to post a reply.