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.

LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Apr 27, 2017
In reply to @missisays7 "Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis....have no..." + (show)
@missisays7

Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis....have no idea about any of it.

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Missy, got your email. You're unable to find the group as it's private due to the nature of the disease and symptoms and medical information. Sent you my FB contact info under Lisa Schwart in Tulsa Oklahoma to send me a friend request ... I can add you after that. We have a handful with sjorgens as well and can help network you with others in your state or country. I've worked networking each and every person I add in to the group w doc hospital info in their states and also docs at mayo and Cleveland clinic that I've referred to several now and being seen at Cleveland all under one doc up there who has 6 SM patients now and just texted him with a 7th referral for another. Had coffee with him and discussed our group that we have and continuity of care w mayo and Cleveland providers and also within each state and we have many overseas all across world networking together with docs and also as friends for support.
Lisa .

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missisays7 | @missisays7 | Apr 27, 2017
In reply to @missisays7 "Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis....have no..." + (show)
@missisays7

Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis....have no idea about any of it.

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THANK YOU! Will contact you on fb. Yes Gulf war illness has been reported with cases of Sjogrens too. I live in Oklahoma also! Just was in Tulsa last week at the mayors veteran committee meeting and welcome home special ceremony to vietnam vets. I looked up on xpertdocs for specialist here in Oklahoma to treat this and hoping she will take my case. It is very hard for me to travel very far with spine disease I also have. SO praying can find one in Oklahoma. There is one in Dallas too. If I have to travel I will...is just hard .

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Apr 27, 2017
In reply to @missisays7 "Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis....have no..." + (show)
@missisays7

Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis....have no idea about any of it.

Jump to this post

Hello @missisays7,

I'd like to add my welcome, and also convey our immense gratitude for your service. I'm sorry to learn that your condition was not diagnosed earlier; it's sad but true, that we don't pay attention to the people we should value, such as yourself, who've probably sacrificed much for our country.
We are glad you've joined Connect, and, as you will see, there is a great community here, ready to share their experiences and offer whatever support they can, to help you.

I'm sure that @billymac65 @dennisl27 @billindc @susierq111 @bakb @denia @bertbiz, @mardellepoff @miker46 @mommasaid @doron @gmeg and others in this discussion will jump in with their insights, and suggestions as well.

This information from UpToDate may also help answer some questions regarding why and what kind of tests are ordered with this diagnosis: http://bit.ly/2qjCW0G

@missisays7, did you have to make significant changes to your diet? Are you experiencing any symptoms with the MP?

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JR | @warlick | Apr 27, 2017

Can anyone respond back to me on sclerosing mesenteritis.

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1 reply
JR | @warlick | Apr 27, 2017

I have just been diagnose with SM I am trying to feel my way through this to choose Florida or Minnesota. I no nothing about either so any help will be greatly appreciated. Reid

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7 replies
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Apr 28, 2017
In reply to @warlick "Can anyone respond back to me on sclerosing mesenteritis." + (show)
@warlick

Can anyone respond back to me on sclerosing mesenteritis.

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Sent you a private message on here

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LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Apr 28, 2017
In reply to @amilhim "is there a cure for Mesenteric Panniculitis? someone I know has just been diagnosed with this..." + (show)
@amilhim

is there a cure for Mesenteric Panniculitis? someone I know has just been diagnosed with this disease after so many years of episodic abdominal pain and apparently wrong diagnosis. she is in her late seventies, is it normal at this age?

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That's a surprising statement as a doc at mayo has consulted on my daughters case off and on since 2008 and she was 14 when diagnosed and 23 now. We have a private med group of approx 350 members all across the USA and multiple other countries with ages ranging from 18 mos at diagnosis to in the 80s, with many in their 30s and 40s and a handful in their 20s. Many which are or have been treated at mayo.
Lisa

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LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Apr 28, 2017
In reply to @hardclose "I'm new to the board, so here is my story...I've been struggling with acid reflux since..." + (show)
@hardclose

I'm new to the board, so here is my story...I've been struggling with acid reflux since Aug 2011 and my doctor was running out of treatment options so he ordered a CT. The CT showed Sclerosing Mesenteritis and also found out that I had slow gastric emptying aka Gastroparesis. Just heard yesterday that I have igG4 labs that are elevated to 163. I have suspected that I may have acquired H Pylori in 2011 but I have been tested 3 times and they were all negative. I'm also having MRI about every six months to monitor the condition and check for lymphoma, etc, so far so good. Anyone have elevated igG4 levels or share similar combination of diagnosis?

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Dear hard close, we have 2 in our group that are positive with igg4 related SM. Feel free to contact me for more info ..
Lisa Schwart
Tulsa Oklahoma

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LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Apr 28, 2017
In reply to @danielcamp "Hi @snoopdog, I hope you get the help you need, cause I know how it can..." + (show)
@danielcamp

Hi @snoopdog, I hope you get the help you need, cause I know how it can be.

Well guys I went to see a surgeon today and. honestly it seems like its the same thing all over again. Went there and he claimed he could not find any reports that said I needed a biopsy or even had this disease. I handed him the reports I had that should that I had it and needed a biopsy and even then he looked and told me that those were from the town over. As such he said they are just trying to frighten you. Should him the head surgeon of his hospital said I needed it and all he did was tell me that he does not see that I do. That if that was the case the head surgeon would have done a biopsy. I get I have a rare disease, if I have it, but this really is getting old as of today it has been four years of me trying to get help, not to mention the first year they were claiming I had cancer. And I am still told by some I have colon cancer but that its find they do not see me needing any kind of treatment.

Tiring, any way I hope everyone else is doing ok.

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Daniel, sent you a private msg on here
Lisa

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Von, Alumni Mentor | @vdouglas | Apr 29, 2017
In reply to @warlick "I have just been diagnose with SM I am trying to feel my way through this..." + (show)
@warlick

I have just been diagnose with SM I am trying to feel my way through this to choose Florida or Minnesota. I no nothing about either so any help will be greatly appreciated. Reid

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Hello @warlick and welcome. It's unfortunate that you have been diagnosed with MP but you have already made a good choice to go to the Mayo. I have been to the Rochester Mn. Clinic for consultation with Dr. Pardi.
I highly recommended them. I would make the appointment with Dr. Darrell S. Pardi at the Rochester Clinic. If you are on the mayo clinic connect site, I believe you can make an appointment clicking the appointment tab at the top right of this page. Please let me know if there is any other information you need.
Good luck and good choice!

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