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

Interested in more discussions like this? Go to the Digestive Health Support Group.

dennisl27 | @dennisl27 | Dec 28, 2016

I had my GI appt yesterday and they have begun treatment with 30mgs of prednisone a day and to get back to them on Friday to tell them how I feel. Will I begin to see much improvement with the pain and fatigue? If anyone has any advice or information/suggestions I would appreciate it.. thank you

dennisl27 | @dennisl27 | Jan 10, 2017

I thought many of you would find the attached article interesting.

http://www.cnn.com/2017/01/04/health/new-organ-mesentery/

viva | @viva | Jan 10, 2017

Thank you @dennisl27

bertbiz | @bertbiz | Jan 10, 2017

I've been following this. Finally, some proof! This will help to diagnose people.

Von, Alumni Mentor | @vdouglas | Jan 10, 2017

In reply to @dennisl27 "I thought many of you would find the attached article interesting. http://www.cnn.com/2017/01/04/health/new-organ-mesentery/" + (show)

How are things going for you if you don't mind me asking?

Deena | @mrsdeecee | Jan 10, 2017

I am also interested in auto immune have PBC .I have had some formal med Ed. Why don't they treat auto immune diseases like AIDS which is. Acquired Immune Diffentcy? Same thing body. Attacking itself? Don't know much about aids makes you wonder?

londonmark | @londonmark | Jan 13, 2017

Just been diagnosed with Mesenteric Panniculitis by CT with contrast following an acute suspected small bowel obstruction and months of persistent upper right quadrant pain. I have a history of Celiac disease (diagnose by endoscopy 2010) and more recently Chronic Inflammatory Demylinating Polyradicular Neurooathy (by biopsy) both (all three?) of which are autoimmune. I take fentanyl and gabapentin for the constant debilitating pain. Interested in following this thread for others stories and to add my own situation to the record. Based in London I attend the well respected Atkinson Morley Dept at St Georges Hospital, London. (Any other U.K sufferers on here?) Mark

dennisl27 | @dennisl27 | Jan 13, 2017

In reply to @dennisl27 "I thought many of you would find the attached article interesting. http://www.cnn.com/2017/01/04/health/new-organ-mesentery/" + (show)

Hi Von
Things have been going alright for me I guess. I was pretty disappointed when my GI took me off of Prednisone after only being on it for 3 days. I had 1 good day on it but 2 days of pain and the same discomfort. I had another CT scan and this time with contrast. An abdominal mass was found and I have surgery scheduled on February 15. They will send it out for pathology and biopsy it so I'll know more after my follow up with him on February 28th. How have you been?
Dennis

Von, Alumni Mentor | @vdouglas | Jan 13, 2017

In reply to @dennisl27 "I thought many of you would find the attached article interesting. http://www.cnn.com/2017/01/04/health/new-organ-mesentery/" + (show)

I have been good, thank you for asking. Still asymptomatic.Thanks for responding I have been wondering how you were doing. Will you have a fine needle biopsy? The main thing is to rule out any other issues I guess so that they can focus on the MP treatment. I think the abdominal mass is pretty typical in the diagnosis. I'm not 100 percent sure but most examples of CT's I've seen refer to It along with the lymph issues. I really hope everything works out well with you regarding this test, I'm sure it will so you shouldn't worry much, hard not to right. I hope the inflammation resides and you can get some relief. Please keep us posted and let us/me know how the test comes out. Best wishes for you, I will pray for you, and your family.von

dennisl27 | @dennisl27 | Jan 14, 2017

In reply to @dennisl27 "I thought many of you would find the attached article interesting. http://www.cnn.com/2017/01/04/health/new-organ-mesentery/" + (show)

Thank you for your thoughts and prayers. Dealing with this as well as my wife's chemo treatments for her stage 4 breast cancer has been a a lot but we are just trying to go 1 day at a time. I believe that you are right about the fine needle biopsy. I will keep you posted. All my best, Dennis

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