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

i am in the same place exactly. being monitored by mofit cancer center. but in the mean time I doubled over again with back and side pain. trying to do physical therapy with this is next to impossible to get results from a back injury.

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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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@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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Google is a great resource. I insisted on a CT Scan and that’s when I was diagnosed with MP. The radiologist that read my scans said he had only heard of MP, but had never seen an actual case. Seeing a GI doctor is the best way to get the treatment you need by a specialist. You don’t necessarily need a biopsy. I haven’t had one, my scans were very clear. Check out the FODMAP diet. In the meantime, while waiting to see the GI doc, eat things like pancakes (with white flour), soup, white rice, banana smoothies made with Kefir. Cut back on vegetables. That’s what I did to give my intestines a break. I took Tylenol for pain when needed. I was told never to use Ibuprofen again. I have had a second set of scans and the inflammation is minimal. I’ve been trying to reincorporate vegetables…slowly. At the beginning when I was diagnosed, I lost 8 pounds. Now I’ve gained that back and feel much better. I just want to qualify this by saying, this is what worked for me. This is what was suggested by my GI doc. I am scheduled to go in for another CT Scan in 6 months. If that is clear, I don’t have to go in again. I was told to think of this as something like IBS. There may be flare-ups occasionally. I hope this helps you.

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@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, @winnah. You’ve come to right place to find people with the same diagnosis (mesenteric panniculitis) to share information and experiences with. As you will see as you read back through the messages posted in this forum, it is important to find a doctor experienced in treating MP.

I’m tagging fellow members @bertbiz @mardellepoff @billindc @retrebotic @txbear @mjg1160 @billymac65 and @miker46 who can share with you, starting with how they found doctors and what tests they had to confirm that they had MP.

Winnah, are you able to research the gastro doctor at OHSU to whom you’ve been referred?

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@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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Colleen, I wrote Winnah just a few minutes ago.

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@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 think we must’ve been writing at the same time 🙂

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@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 for the Info, especially the food ideas. I have been trying to eat light, small meals. I seem to feel better if I do not eat too much at one time. I have also added in fresh ginger tea and a mixture of turmeric and honey for inflammation.

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Those are all good things. I add turmeric when I cook chicken. Smaller meals work better for me, too.

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@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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@colleenyoung I will not know what Dr my referral will go to for a week or two. I did read the specialties for the 18 Gastro Dr’s at OHSU and of course MP wasn’t listed. I will call on Monday and do a little research on my own. Oregon Health and Science University is the biggest hospital here and if there was a specialist it would be there. The downside is that a referral takes a long time and it can be months before you get an appointment. I am hoping that since it’s something they do not see a lot that they might get me in sooner. I am pushing for a biopsy since I had uterine cancer 3 years ago. I read that up to 30% of the time there can be underlying cancer or cancer spread for some where else. I have had abdominal ct scans every 6 months for 2 and a half years up until Dec of last year when I was released from follow ups. Nothing has ever shown up on my ct scans until now.

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@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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Sounds like you are being very proactive. You are your best advocate. Good for you. Please let us know what you find out.

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@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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My husband was diagnosed with MP in May of this year. His PCP said it was a “controversial” diagnosis, and his GI was not responsive. Since we live an hour from both DC and Baltimore, I started trying to find a doctor who was familiar with MP. Finally found one, but our insurance changed and this doc was no longer in network. Needless to say, the moral of the story, do not give up. Keep pushing. This is a REAL condition, and your pain is very real. What works for one person, may not work for the next person, so, you need to keep trying. I have found that raw fruits and vegetables cause my husband discomfort, so he eats primarily cooked fruits and veges. Basically, looking for things that are easier to digest works for him. Good luck, and don’t give up!

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This is a message from me to anyone who has posted on the Mayo Clinic discussion site in regards to either Mesenteric Panniculitis or Sclerosing Mesenteritis. There is a very active support group on Facebook under the name of “Sclerosing Mesenteritis” with approximately 277 members, give or take. The site shows a picture of blue ocean water with some rocky coastline on each side. You can look up the group on Facebook to try to join the group. The group is very supportive and helpful. Some of the members have been to the Mayo Clinic. Our members are from various states across the USA as well some from Canada, Australia, the UK and a few other countries. My name is Vivian and I am member of this group as I have this disease. You cam PM me if you want more info but I am not in control of adding people to the group. Good luck to all of you with this disease! Take care. Vivian

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@msvivian

This is a message from me to anyone who has posted on the Mayo Clinic discussion site in regards to either Mesenteric Panniculitis or Sclerosing Mesenteritis. There is a very active support group on Facebook under the name of “Sclerosing Mesenteritis” with approximately 277 members, give or take. The site shows a picture of blue ocean water with some rocky coastline on each side. You can look up the group on Facebook to try to join the group. The group is very supportive and helpful. Some of the members have been to the Mayo Clinic. Our members are from various states across the USA as well some from Canada, Australia, the UK and a few other countries. My name is Vivian and I am member of this group as I have this disease. You cam PM me if you want more info but I am not in control of adding people to the group. Good luck to all of you with this disease! Take care. Vivian

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Hi Vivian, There is great synergy between forums like Mayo Clinic Connect and facebook. I appreciate your making Connect members aware of yet another option to meet people. You’ll note that I’ve edited your email to instead direct members to private message you. To keep members safe, we recommend sharing personal contact information by private message which is secure from unwanted spam and trolls.

Vivian – how are doing? How have you been managing with the symptoms of MP and/or flare-ups?

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I’m an African American female and I was diagnosed with MP March 2015. Absolutely no one understands the pain or fatigue I feel every single day and I don’t want to feel like I’m complaining when I say I’m hurting or tired everyday but I am.

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I was diagnosed with MP May of this year. I understand you pain and fatigue. You are not complaining, you are stating how you feel. What kind of treatment have you gotten?

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