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

@billindc

Gmeg,

Thanks so much for writing! Could you tell me something about the “lumps
and bumps”, since I’ve found a few pea-sized lumps under the skin of my
forearm that no one can figure out.

I just read a paper from NIH discussing Ankylosing Spondylitis and
periodontal disease. I tried discussing with my Dentist this week when I
asked her to accommodate what the paper had recommended and she said “you
can’t believe everything you read”. I think I can put some faith in a study
when it’s from NIH, and I have an MS in Pharmacy so I can do some basic
interpretation…gee whiz! LOL An MD or PhD doesn’t guarantee you have a
monopoly on intelligence. I’m sorry you have run into that behavior. Stick
to your guns and look out for yourself because no one else is going to do it
for you!

Warmest,

~Bill

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Hi The lumps and bumps were described by an MD long ago as fatty tissue under the skin. GMeg

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Hi I have had bloating for years, spurs on my ribs, lumps and bumps all over. I am going back to a strict Mediterranean diet as that addresses the overall inflammation, and has stopped polyp formation for 2 years. I ‘ll have another colonoscopy in a few months. My twin sister died from colon cancer in 2000. I’ve had polyps every year up until 2013. It stopped in the first year I followed the die and continued the second year, so my gastro suggested we wait two years. The CRP test which measures overall body inflammation has been within normal limits also.. That test should be done every year. Thanks for your inclusion in the group. GMeg

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@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

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Hi I don’t have Facebook. How can I get involve with this group ? (Schlerosing Mesenteritis and Idiopathic Nodular Panniculitis ) . I am an RN and am new to Connect. I am amazed how much I have learned in such a short time, and after so many years of my own research (despite no help from local MD’.s ) Dr Darryl Pardi at the Mayo Clinic was very helpful.
I live in Upstate NY (Halfmoon ) The trip to the Mayo Clinic was worth the cost and effort.
GMeg

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No problem @gmeg. Not everyone has Facebook. You can continue sharing here. Some members do both, others only share on Connect and others prefer to share only on the Facebook group. Luckily we are connected through the members who share on both. If any of your questions or concerns don’t get addressed here, I’m confident someone who shares on both will help you out.

Happy to have you in the group.

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@colleenyoung

No problem @gmeg. Not everyone has Facebook. You can continue sharing here. Some members do both, others only share on Connect and others prefer to share only on the Facebook group. Luckily we are connected through the members who share on both. If any of your questions or concerns don’t get addressed here, I’m confident someone who shares on both will help you out.

Happy to have you in the group.

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I am having trouble posting for this group. What am I doing wrong?

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Hi @bertbiz. It appears that you were able to post to this thread successfully. Welcome to the Connect community.
If you have any other questions about using the website, see the link How to Get Started on Connect https://connect.mayoclinic.org/get-started-on-connect/ or send me a message.

We look forward to getting to know you. Do you have Mesenteric Panniculitis or Schlerosing Mesentertis?

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@colleenyoung

Hi @bertbiz. It appears that you were able to post to this thread successfully. Welcome to the Connect community.
If you have any other questions about using the website, see the link How to Get Started on Connect https://connect.mayoclinic.org/get-started-on-connect/ or send me a message.

We look forward to getting to know you. Do you have Mesenteric Panniculitis or Schlerosing Mesentertis?

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Hi Coleen,

I “piggy backed” my message off of some one else’s post.

Roberta

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Glad you found a work-around. It is a usability problem with the new design. I’ve alerted the tech team to insert a reply window at the end of the thread. To add a new message, you have to click REPLY under the original post, which is a problem, especially with long threads like this one. We’ll get this fixed in the next couple of days.

In the meantime, @bertbiz tell us a bit about yourself.

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@colleenyoung

Glad you found a work-around. It is a usability problem with the new design. I’ve alerted the tech team to insert a reply window at the end of the thread. To add a new message, you have to click REPLY under the original post, which is a problem, especially with long threads like this one. We’ll get this fixed in the next couple of days.

In the meantime, @bertbiz tell us a bit about yourself.

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Well, Colleen, I was diagnosed with Mesenteric Panniculitis on Friday, May 20th. It was quite a surprise for everyone, the doctors included. I started on Prednisone on Saturday. I went in for a glucose test today and my glucose was high. So tomorrow I get to do a fasting glucose test and then go eat something and come back and do another glucose test. I was diagnosed by my Primary Care clinic and physicians. I will be seeing the GI people June 6th. I’m oddly calm. I figure I can only take this one step at a time. I’ve done some reading up on it, but not a ton as to not scare myself too much. So far the pain has subsided a bit. I’m eating again. Never had any vomiting, diarrhea or constipation, just pain. Sometimes severe pain, sometimes a dull deep ache. Hard to pinpoint where the pain was or why it moved from place to place in the band below my bra line and above my belly button. I had been to 3 different doctors with no result. Finally I insisted on being seen last Friday and also insisted on a CT Scan. I had my first appointment at 8:15 AM on Friday, had my CT by noon and my diagnosis by 4:00. It was such a relief this “thing” had a name finally. I cried for a lot of reasons. Relief, anger, frustration. So I will take this process in increments. I will start with the Prednisone and see what happens. I’m very lucky my friends look out for me. A friend of mine found this support link. I’m grateful you guys are here. I’ll look forward to seeing everyone’s progress, stories, successes, frustrations. I will also be grateful for any advice. Thank you.

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@k2aunt

I came across this posting while doing a search and decided to join because it looks useful to me. I was diagnosed with mesenteric panniculitis on February 20 of this year after going to the emergency room in extreme pain and not being able to keep any food or liquid down. I was brought back to the rapid response room from triage because of a high heart rate which i wasn’t having any chest pains at all and the e.r. doc sent me for a CT Scan which showed the mesenteric panniculitis. i was told the pain could last from 12 to 18 months which is not fun. I was put on levaquin and flagyl and told to follow-up with a g.i. doc which i did with an associate of my regular g.i. doc.. She ran some blood work and put on me on another set of meds which worked for a bit then the pain came back again. Got a chance to talk to my regular g.i. doc when accompanyming my husband on his follow-up visit and mentioned that i was diagnosed with this. I was told if i am still having issues to let him know after my husband’s endoscopy which i did and was prescribed another med which helped for a bit then stopped worked like the other meds i had been on. While waiting for my husband to come out of surgery for a muscle biopsy i received a call from my g.i. doc after leaving a message to let him know that the pain came back full force a couple of days prior with nothing helping. He had me go under another endoscopy which didn’t show anything to the naked eye since he couldn’t do a biopsy since I am currently on coumadin and didn’t come off since this was somewhat an emergency. I was put on 3 new meds at the time which somewhat helped and like before didn’t last very long helping the pain. Saw him for my follow-up last monday and put on another med along sending me for another set of x-rays that showed the area that does not show up with a colonoscopy and endoscopy which those came back normal. My doc is now stumped on what to do to help control the pain so he is at the point he is sending me to either Johns Hopkins or Medstar Georgetown Hospital for further evaluation. I don’t mind dealing with pain but if i get a “flare-up” it hurts to the point i can’t do anything. Thanks for listening and any suggestions you might be able to provide.

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Hello. My husband was just diagnosed with MP this past weekend. We have gone for years with the pain, nausea, vomiting, etc. When it gets real bad, we go to the ER where they rule out heart, drug him up for the pain, then send him home, often still vomiting, with instructions to follow up with GI. Fortunately we had a new young doc this past weekend in the ER who suggested MP, which was confirmed with the CT. He has had CT scans in the past which have “not shown anything definitive”, but now I wonder if they were just not looking in the right place. We are in Frederick County, Md, and were wondering if there was anyone in Baltimore or DC studying/familiar with MP. Have you had any luck? Thanks for your help.

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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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@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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Thank you. I just sent a message to Billindc. Hoping we can connect and exchange info.

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