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

Hi Missy, I’ll send you a private message in here for some addl info on a private group with over 340 members with MP or SM.
Lisa

Liked by missisays7

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@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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Hello @missisays7, Welcome to this discussion group.
Sorry to hear they dropped the “suggestive of Mesenteric Panniculitis” Bomb on you. There is a lot of information available through this group and other groups as well. There is “Some” good information on the internet.

Are you having severe symptoms? On any Meds at this time? Seen a Gastroenterologist? I don’t mean to pry but those are some of the questions that give some information on where you are in the process of things.

I don’t want to comment on what Suggestive of Panniculitis could mean but I do know it may not be not such a bad thing depending on the other information included in your CT reading. Was your CT with contrast injection?

Hope to hear back from you, best wishes for your health and peace of mind.

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@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. Im Gulf War Illness veteran and due to the myriad of symptoms that can include…which intestinal condtions such as sjogrens disease and others….things are overlooked….we muddle through the system with this vague list of symptoms and that. In 2013 I had ascites after passing kidney stones….severe…fluid around all my organs..hospitalized….and thus series of tests began. They noted issues in abdomen…life went on…stuff ignored as usual.
Then early this month I contracted rocky spotted mountain fever ( confirmed by lab taken days later just got confirmation today) was in ER for abdominal pain. On the CT they noted progression from the stuff in 2013 and through out the mesentery panniculitis……that was incidental to the other notes on the fluid around appendix( rmsf mimics appendicitis) . So in essence…the tick infection led to the CT the VA did not follow up with and this now I know of the mesentery issues progressing.
Had seen a heart doctor this week who looked at all my tests done from 2013 to now…with the ascites and stuff noted in digestive organs and he immediately suggested oncology, hematology and gi for surgery consult.
SO now….I know what mesentery panniculitis means…wow….GLAD to finally meet people who are familiar with it! I have looked all over the internet. Searched on fb and the only thing came up was two people mentioned it in a post. Did not see any groups on it.

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@lisas444

Hi Missy, I’ll send you a private message in here for some addl info on a private group with over 340 members with MP or SM.
Lisa

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Thank you! Have been looking for something like that!

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@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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NO they did not do ct with contrast the reporter of it suggested follow up with contrast…the only follow up was ultrasound that the tech said she didnt understand why they ordered this test..but the heart doctor referred me to oncology, hematology and GI for surgery consult, he is private non va doctor through veteran choice program living 40 miles from nearest VA.

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@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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Wow, I’m going to read your post a couple of times to take it all in.

This is a multi national group so assuming you are US Military, I thank you for your service. Keep us posted on how things progress for you. Hopefully all those issues get prioritized and knocked down one at a time. If you have any questions bring them here, hopefully someone can help. May I suggest to read through past posts, there is some good advice on diet and a lot of good general information about the disease.
Best wishes to you!

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@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 .

Liked by missisays7

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@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 .

Liked by JR

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@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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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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Can anyone respond back to me on sclerosing mesenteritis.

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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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@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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@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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@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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@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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