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

hello, I was diagnosed in 2016 but doctors at my hospital knew i had a mass on my abdomen since 2011 after complaints of pain and visits to the emergency they would diagnose me with anxiety for the pain. I started diabetes in October of 2016 and am taking metformin 2x a day. I have started noticing pain in my upper left abdomen which is new and my diabetes has been high, I have also having vision problems but don't know if it is related to the diabetes or diabetes caused by mesentery sclerosing affecting my pancreas. It is new to me this and the more I research I do the more confused I get so I hope someone can related if they have similar symptoms

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Hello @tonyleduc and welcome to Mayo Connect. Connect is a great place to share your concerns about health issues. While we are not medical professionals, just patients like yourself, we do offer a listening ear and support while you are seeking answers.

It sounds as if you have a number of problems that are causing you discomfort as well as concern and that is certainly understandable. Many of us at Connect, have had long-standing health issues that were difficult to diagnose and we pursued many avenues before getting to a correct diagnosis and treatment plan.

You do not mention having had surgery for the mass on the abdomen, is that something that has been considered? Have you considered a second opinion by a large research oriented hospital like Mayo or other university medical center? Complex problems are often best diagnosed and managed where there is research and many specialists who can sort through the different symptoms and reach a diagnosis and a treatment plan.

I would like to invite another mentor, @vdouglas, to this discussion. Perhaps he can add some of his own experiences to your post.

I look forward to hearing from you again.

Teresa

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Hello, I can’t agree more with Teresa that a research facility is the best place for help with problems like yours. Although my case was A-typical, I ended up at Mayo Clinic in RochesterMN in 2016 where I was diagnosed with Carcinoid Cancer after having been diagnosed with Messenteric Panniculitis in 2012 by local doctors. I had gone through many imaging tests in response to my complaints of pain over the years which only showed MP. The exploratory showed what images could not. Surgery saved my life. I am now followed at Dana Farber in Boston by a research oncologist. Wishing you success.

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Hello @musicflowers4u

I am so glad that you found the help that you needed at Mayo. This information about a second opinion could be very helpful to @tonyleduc

Teresa

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@hopeful33250

Hello @tonyleduc and welcome to Mayo Connect. Connect is a great place to share your concerns about health issues. While we are not medical professionals, just patients like yourself, we do offer a listening ear and support while you are seeking answers.

It sounds as if you have a number of problems that are causing you discomfort as well as concern and that is certainly understandable. Many of us at Connect, have had long-standing health issues that were difficult to diagnose and we pursued many avenues before getting to a correct diagnosis and treatment plan.

You do not mention having had surgery for the mass on the abdomen, is that something that has been considered? Have you considered a second opinion by a large research oriented hospital like Mayo or other university medical center? Complex problems are often best diagnosed and managed where there is research and many specialists who can sort through the different symptoms and reach a diagnosis and a treatment plan.

I would like to invite another mentor, @vdouglas, to this discussion. Perhaps he can add some of his own experiences to your post.

I look forward to hearing from you again.

Teresa

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No Teresa, they told me that I had this mass on my abdomen but I assume it wasn't an issue. They did a PET scan, which is where they discovered I had six lymph nodes which had increase in size. They followed those results with a biopsy it is then they discovered I had mesentery sclerosing.

REPLY
@hopeful33250

Hello @tonyleduc and welcome to Mayo Connect. Connect is a great place to share your concerns about health issues. While we are not medical professionals, just patients like yourself, we do offer a listening ear and support while you are seeking answers.

It sounds as if you have a number of problems that are causing you discomfort as well as concern and that is certainly understandable. Many of us at Connect, have had long-standing health issues that were difficult to diagnose and we pursued many avenues before getting to a correct diagnosis and treatment plan.

You do not mention having had surgery for the mass on the abdomen, is that something that has been considered? Have you considered a second opinion by a large research oriented hospital like Mayo or other university medical center? Complex problems are often best diagnosed and managed where there is research and many specialists who can sort through the different symptoms and reach a diagnosis and a treatment plan.

I would like to invite another mentor, @vdouglas, to this discussion. Perhaps he can add some of his own experiences to your post.

I look forward to hearing from you again.

Teresa

Jump to this post

@tonyleduc

I appreciate the additional information. Do you currently see a doctor who specializes in mesentery sclerosing? Regarding your diabetes, do you see an endocrinologist or an internist?

Have you given any consideration to a second opinion? I only mention this because it sounds as if you have questions that keep you concerned about your health and a second opinion by a good research oriented health system might put your mind at ease regarding your diagnosis as well as your treatment plan.

Here is some information about mesentery sclerosing treatment from Mayo's website, https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090 and https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/symptoms-causes/syc-20355087.

I hope that all goes well for you, Tony, and that you get enough information to make you feel comfortable about your treatment for mesentery sclerosing as well as the diabetes issues.

Teresa

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Hello, I was diagnosed with Sclerosing Mesenteritis in April after going to the ER with pain and vomiting. It was discovered with a CT scan and showed several nodules on my mesentery. I have seen a Gastrologist that has referred me to the research hospital. He said that they are the only people that will know how to treat this disease because it’s so rare. It is taking me months to get an appointment and I still have several weeks left before my appointment. I’m really concerned because I’m getting worse. I’ve taken prednisone and zofran for nausea. I’m looking for someone else who has been diagnosed and has more information on this disease. Also, I had gastric sleeve surgery in 2013 and I’m wondering if it is a cause for this disease. If anyone knows if it has been linked please let me know.

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Welcome Mr Bill! I too have no underlying cause-all guesses! Mine never really goes away. I have to watch my triggers constantly. But I can flare at any time and end up in the hospital. I was diagnosed at a University Hospital by CT but have have no specialist that I see regularly. I hate prednisone but have been on it many times. I never travel without some pain meds and Gravol. I’ve had it many years and am getting better all the time with my triggers. How about yours? Do you know any. Very imp for me I’d rest and sleep. I’m usually resting by 7:30 just about every night-yes-I’m a “dull” girl for sure. But I keep smiling. Since retiring from a stressful vocation I have been so much better! Good you’ve joined out group. The Facebook group is great as well.

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@beallm

Hello, I was diagnosed with Sclerosing Mesenteritis in April after going to the ER with pain and vomiting. It was discovered with a CT scan and showed several nodules on my mesentery. I have seen a Gastrologist that has referred me to the research hospital. He said that they are the only people that will know how to treat this disease because it’s so rare. It is taking me months to get an appointment and I still have several weeks left before my appointment. I’m really concerned because I’m getting worse. I’ve taken prednisone and zofran for nausea. I’m looking for someone else who has been diagnosed and has more information on this disease. Also, I had gastric sleeve surgery in 2013 and I’m wondering if it is a cause for this disease. If anyone knows if it has been linked please let me know.

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Hello Bill, glad to have you as part of the group. Your gastroenterologist in my opinion really did you a favor by referring you to a research hospital maybe they can find a way to help you. Then you can tell us all what they did for you because we are all hoping for a cure or at least a treatment. I suggest that you watch your diet. There are some foods that I'll probably never eat again. They send me on a sickness cycle that's horrific. So watch your diet and good luck at your appt. Viv

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I have no underlying cause as well, but do have ankylosing spondylitis. And a few days before my MP flares up I get pain in the joints of my hands.. very odd. Triggers seem to be lack of rest or too much stress. Diet doesn't seem to play much of a role for me. I have tried Bentyl and hyoscyamine as well as prednisone. Starting on Humira shortly for my arthritis and it will be interesting to see if it prevents flare-ups with my MP. I still get a CT scan every 6 months for lymphoma but so far I've been lucky and nothing in that regard has appeared.

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@beallm

Hello, I was diagnosed with Sclerosing Mesenteritis in April after going to the ER with pain and vomiting. It was discovered with a CT scan and showed several nodules on my mesentery. I have seen a Gastrologist that has referred me to the research hospital. He said that they are the only people that will know how to treat this disease because it’s so rare. It is taking me months to get an appointment and I still have several weeks left before my appointment. I’m really concerned because I’m getting worse. I’ve taken prednisone and zofran for nausea. I’m looking for someone else who has been diagnosed and has more information on this disease. Also, I had gastric sleeve surgery in 2013 and I’m wondering if it is a cause for this disease. If anyone knows if it has been linked please let me know.

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Same scenario here. Hard to get pain meds when so few people understand the disease. Darrell Pardi at Mayo is supposed to be the best. Met him once and what a nice guy! You're not alone and symptomatic treatment can really help….. It gets better. I did see a study one time that mentioned a link between Autoimmune disease and previous abdominal surgery but with so few people to study it's hard to make conclusions. I've had my gallbladder removed and have ankylosing spondylitis. Hang in there!

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Morning all! I am wondering if you have big issues with joint pain? I seem to be struggling with many joints being red hot and so uncomfortable, especially at night. Any info you can share-if this is related-thx!

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