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

@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 🙂

Liked by traveling

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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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@colleenyoung

Welcome to Connect @mardellepoff. What a relief to have the hope of diagnosis so that you can get proper treatment. As has been mentioned by many in this thread, it is important to find a specialist who knows about MP. Like you @billindc was asking about a doc in the Baltimore or DC area. See his message here about a physician from Mayo Clinic consulting with his doctor in DC https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/?pg=4#post-222993

@billindc what other info would you share with Mardelle?

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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.

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Hi, I have been fighting this severe abdominal pain that tends to stay near my belly button and then likes to radiate left. Some days its manageable and some days I am literally doubled up waiting to die. I recently got a job at a hospital with awesome benefits so I starting talking to every doctor I could find as I support them all. Various pain management drugs were tried with little effect so I found a GI who scoped me from both ends and found nothing. Then they ordered a CT and wham there it was. I was diagnosed with mesenteric panniculitis but finding what is best to kill the pain is a battle still raging. They started me on 40mg of prednisone which works great but is causing other issues such as fast heart rate and elevated blood pressure not to mention makes me moody as hell. 10 years ago I was diagnosed with prostate cancer at age 38. I already have high blood pressure and I am also a prostate cancer survivor. My doctor is not all that versed on this condition and both the GI docs here at the hospital seem also not to know much about it. My doctor has tried other things but nothing works like the prednisone. I just can’t handle the side effects. I wish I could find someone locally who has a good understanding of this disease and could help me find a way to cut out the pain. I was quite overweight and have been on a diet to the point that I have dropped 30 pounds but the pain some days continues to be unbearable. Starting to get frustrated.

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@croller68

Hi, I have been fighting this severe abdominal pain that tends to stay near my belly button and then likes to radiate left. Some days its manageable and some days I am literally doubled up waiting to die. I recently got a job at a hospital with awesome benefits so I starting talking to every doctor I could find as I support them all. Various pain management drugs were tried with little effect so I found a GI who scoped me from both ends and found nothing. Then they ordered a CT and wham there it was. I was diagnosed with mesenteric panniculitis but finding what is best to kill the pain is a battle still raging. They started me on 40mg of prednisone which works great but is causing other issues such as fast heart rate and elevated blood pressure not to mention makes me moody as hell. 10 years ago I was diagnosed with prostate cancer at age 38. I already have high blood pressure and I am also a prostate cancer survivor. My doctor is not all that versed on this condition and both the GI docs here at the hospital seem also not to know much about it. My doctor has tried other things but nothing works like the prednisone. I just can’t handle the side effects. I wish I could find someone locally who has a good understanding of this disease and could help me find a way to cut out the pain. I was quite overweight and have been on a diet to the point that I have dropped 30 pounds but the pain some days continues to be unbearable. Starting to get frustrated.

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Hi croller. Some good info here. We also have a private group with 350 members all across the USA and several other countries with SM and MP. My daughter was diagnosed with severe aggressive SM following a misdiagnosed ruptured several day old appy and 3 back to back abd surgeries, sepsis, and a month inpatient when this all started. SM diagnosed after all that and life changed and has almost taken her life a few times now. She was diagnosed when was 14 and is now 23. We have a wonderful group would love to add you to and network you with others near you and support. Work with every member adding in in networking doc and hospital info within your state and or country for doc who will see and treat SM/mp . Sent you a private msg as well. Hope to hear back from you.

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@croller68

Hi, I have been fighting this severe abdominal pain that tends to stay near my belly button and then likes to radiate left. Some days its manageable and some days I am literally doubled up waiting to die. I recently got a job at a hospital with awesome benefits so I starting talking to every doctor I could find as I support them all. Various pain management drugs were tried with little effect so I found a GI who scoped me from both ends and found nothing. Then they ordered a CT and wham there it was. I was diagnosed with mesenteric panniculitis but finding what is best to kill the pain is a battle still raging. They started me on 40mg of prednisone which works great but is causing other issues such as fast heart rate and elevated blood pressure not to mention makes me moody as hell. 10 years ago I was diagnosed with prostate cancer at age 38. I already have high blood pressure and I am also a prostate cancer survivor. My doctor is not all that versed on this condition and both the GI docs here at the hospital seem also not to know much about it. My doctor has tried other things but nothing works like the prednisone. I just can’t handle the side effects. I wish I could find someone locally who has a good understanding of this disease and could help me find a way to cut out the pain. I was quite overweight and have been on a diet to the point that I have dropped 30 pounds but the pain some days continues to be unbearable. Starting to get frustrated.

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Hi there,

For some people (but definitely not all), they can control symptoms with diet. For me diet has been my savior. I have never taken any steroids or any other meds although I have seen a Messenteric specialist. I do go through periods of pain that are bad and it is only when I cheat. I think I am fortunate to have an autoimmune version of this. I have done two things to place my symptoms in remission:

1. I am on the Paleo autoimmune protocol
2. I take the following gut supplements as recommended by Kris Kresser (here is the link: http://my.chriskresser.com/the-supplement-guide/). I take the list for digestive disorders and the list for autoimmune.

Bullet 2 has changed my life, allowed me to cheat on my diet and basically removed my bloating. Some people go on FODMAP diet, but the Paleo autoimmune protocol works for me. I know that many folks don’t have an autoimmune version, but I imagine that these supplements and probiotics would help with general health. I used to have Gerd (acid reflux for 11 years, taking 300mg of zantac daily) and now I don’t take a single pill.

Good luck!

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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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Thx, shared that info with the group.

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@deets

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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Sent you a pm

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