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

@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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@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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@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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Thanks so much everyone has been so helpful however I met with my Doctor yesterday and because I am a Veteran he wants me to see the VA GI doctor for recommendations before they out source my care. I am asking them to pay for it since l am under their care I will wait and see. With the SM Groups support I feel so hopeful. Thxs again everyone, Wishing all of us God Speed.

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Good to have you James (Reid). So much good info (350 members) and looks like you had a couple referrals already
Lisa

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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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And a fellow Oklahoman. Nice chat on the phone. Lmk if you need anything else. You have my number and some good references to start in your journey with MP

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@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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Asking for clarification on this, but we’ve had many members (we have a private group growing everyday and up to 350 members presently) but made over past year assume they were making appts with Dr. Pardi to get there and traveled a long ways, and have to see an associate and many have been told pardi isn’t seeing patients ….not sure if this is temporary or not? Not taking new patients? Retiring? Not sure what the situation is, but our last ten or so or more have not seen Dr pardi after making an appt with him and traveling a long ways to see him and out the money. Many have been upset never saw him and told they wouldn’t be seeing him and were told they get to see a gi. Do we know what that answer is from any of the mayo employees? A correct answer ? Thx all 🙂

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@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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Hi @warlick,

Thank you for sharing the update and information. Please note that I removed your personal email and address from this public discussion. Posts to the discussion board are public, and we don’t want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a secure, private option.
Thank you for understanding.

Please keep in touch and let us know if you have any questions; we’re listening.

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@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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Ok thxs no problem

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Hi All, I was just told I have MP after having severe abdominal and fever with nausea and vomiting. I had a Ct which showed a hazy mesentery and mildly prominent nodes. Glad I found this group. Going to see GI MD in 2 weeks.

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@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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Hi @lisas444,

Mayo Clinic gets more requests to see patients with mesenteritis than Dr. Pardi can see himself. We have a team of expert doctors experienced in treating patients with this diagnosis, who work collaboratively at each of our 3 locations: Rochester, Florida and Arizona. Many of them have done research with Dr. Pardi on mesenteritis. Dr Pardi’s colleagues often consult with him, especially with extraordinary cases.

Due to the large number of requests for appointments we get for mesenteritis, our physician experts review the CT scans of each patient prior to their traveling to Mayo Clinic. Their review helps them to determine whether to offer an appointment. For patients with minimal findings on CT scan, we may suggest seeking care locally. It is our goal to provide the best care each patient needs, however we do not want to have you incur additional costs for evaluation or travel if we do not feel we can offer care that is different from what you’re already receiving or can receive locally.

I hope this helps answer your question.

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