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Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

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.

Profile picture for BILLinDC
BILLinDC | @billindc | Nov 10, 2016
In reply to @winnah "Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I..." + (show)
Profile picture for winnah @winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn't seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

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I like the docs at Capital Digestive in DC; but no real experts in DC or up at Johns Hopkins. The real authority in the US is Dr. Darrell S. Pardi, MD up at the Mayo Clinic in Rochester, MN; but, that's a journey. Good luck!

REPLY
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adelecj57 | @adelecj57 | Nov 10, 2016
In reply to @winnah "Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I..." + (show)
Profile picture for winnah @winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn't seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

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Thanks.  I do see one of the doctors at Capital Digestive.  He is at the Olney, MD office.  He is trying to find another doctor in the area that might know more about MP. I was recently diagnosed and just had some blood work done to see what my inflammation markers are. He mentioned prednisone and some other medicine but wanted to wait.  I have a followup CT scan in January to see if there are any changes to the small abdominal mass I have (it was benign).  I have been reading about the FODMAP diet and find that some of the foods I tend to avoid are the ones on the do not eat list.I don't think I want to go to MN but will if I have to.

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Nov 11, 2016
In reply to @winnah "Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I..." + (show)
Profile picture for winnah @winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn't seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

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Welcome to Connect, @adelecj57. I'm so sorry about your diagnosis, but you've come to the right place to find support and information.

I see that @billindc has addressed your question, (thank you billindc!), and I wanted to follow up, and introduce you to the many Connect members who live with mesenteric panniculitis. Please meet @billymac65, @mommasaid, @vdouglas, @doron, @ngilson, @bertbiz, @mardellepoff, @txbear and @miker46.
Some, like you, were diagnosed recently, and other members have been managing the condition for quite some time. You may also read the discussion here: http://mayocl.in/2eZsrdG.

@adelecj57, has the FODMAP diet helped you? If so, could you tell us a little more about your experience with the diet?

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Mardelle Poff | @mardellepoff | Nov 11, 2016
In reply to @winnah "Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I..." + (show)
Profile picture for winnah @winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn't seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

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We contacted Dr. Pardi, who, through a few contacts, put us in touch with Dr. Raymond Cross at University of Maryland Medical Center. He is GI doc with a primary focus on inflammatory bowel disease and has one other patient with MP. He may be a place to start.

REPLY
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adelecj57 | @adelecj57 | Nov 11, 2016
In reply to @winnah "Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I..." + (show)
Profile picture for winnah @winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn't seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

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Thank you. I will check him out .<br>Adele <br>

REPLY
Profile picture for adelecj57
adelecj57 | @adelecj57 | Nov 11, 2016
In reply to @winnah "Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I..." + (show)
Profile picture for winnah @winnah

Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn't seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!

Jump to this post

I have only just looked into the FODMAP diet so I haven't had a chance to start yet. Just did a little shopping today for some items. I will let you know once I give it a good try.<br>Adele <br>

REPLY
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viva | @viva | Nov 12, 2016
In reply to @angel11 "I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of..." + (show)
Profile picture for Erin11 @angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

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I was recently diagnosed with MP. I was told that I have probably had this condition forbyears. I do not have much pain but I am certainly fatigued and nauseous. I have my first appointment with a gastroenterologist next week.

REPLY
Profile picture for Kanaaz Pereira, Connect Moderator
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Nov 12, 2016
In reply to @angel11 "I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of..." + (show)
Profile picture for Erin11 @angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

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Hello @viva,

Welcome to Connect. I'm very sorry to hear about your diagnosis; however, here you will find so many other members who share your pain and can offer support.

I would like to bring in @bertbiz, @mardellepoff, @miker46, @billymac65, @mommasaid, @vdouglas, @doron, @ngilson, @billindc, and @adeleccj57, in the hope that they will share their experiences with you.

Viva, we would love to get to know you better; what are you doing to manage the fatigue and nausea? Has your doctor put you on any medications that may be causing these symptoms?

REPLY
Profile picture for viva
viva | @viva | Nov 12, 2016
In reply to @angel11 "I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of..." + (show)
Profile picture for Erin11 @angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

Jump to this post

I am just testing to see if I can post. I tried and had no luck a second ago.

REPLY
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Von, Alumni Mentor | @vdouglas | Nov 12, 2016
In reply to @angel11 "I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of..." + (show)
Profile picture for Erin11 @angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

Jump to this post

Hello @vivaHello and welcome, sorry you have to deal with this condition. I also have MP.I am curious, were you recently diagnosed with MP because you had a CT scan and it showed up on the scan? Was this an ER visit? No pain is certainly a good thing.Wishing you well@vdouglas <br> <br> <br> <br> <br> <br> <br>

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