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Mesenteric Panniculitis or Sclerosing Mesenteritis
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
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Thank you so much for your reply! I greatly appreciate 🙏 I do have a question? Do you mind sharing what medication you take for flare ups? I think I'm having one again right now just after 2 weeks of being diagnosed. I feel so miserable 😞
I would really need your help.
First let me say that i dont live in the USA, but Hungary, Central Europe, however at least some doctors here seem to know mesenteric panniculitis, this is not an issue.
On my radiology report the radiologist wrote mesenteric panniculitis, all the lymph nodes are below 5 mm, however my father is a doctor and he has a good radiologist friend and i have asked him to check the images and he said that there is no inflammation anymore, just leftover mesenteric fibrosis from the previous inflammation.
He said, that as this is not an inflammation, steroids won't work, still my GI doctor tried them, but they dont work, i have just finished the therapy.. GI doctors here work from radiologist's written text / findings but not from the images. ( i am not even sure that they are trained to interpret them).
I have met many GI doc's, some said just leave it alone, nothing to do, it is nothing, but finally the last one tried to treat me with steroids and she had other patients for whom steroid worked.
My question to you is that what is the treatment for you who has the fibrosing/fibrosys type of mesenteric panniculitis?
This is what i have found on the net:
Mesenteric panniculitis can be divided into two main groups: the mesenteric panniculitis with only the inflammation and degeneration of the mesenteric fat, and the retractile panniculitis, mainly fibrotic, with retraction of the surrounding structures.
It seems that i have the second one.
I had a very strong upper abdominal pain episode when i went to the ER thinking that i have pancreatitis. After this episode, the pain went done from 10/6 to 10/2,3 (it is there since then), but i still always feel the dull or sometimes burninng pain in my upper abdominal which is worse by movement.
So what is the treatment/experience for you who has the fibrosing/fibrosys type of mesenteric panniculitis? Or you had a mesenteric panniculitis with inflammation and there is fibrosis left?
I need guidance, I feel along having MP, feeling weak and tired all the time, I was diagnosed on Jan 31st. this past week I think I had a small flar up, not in pain just depressed and feeling fatigue.
@ray210 I feel ya! I mostly work from home and there are some days where it is everything I can do to just stay awake at my computer. In those instances, I go for at least a 20-minute walk to get the heart rate up and adrenalin pumping. There is a Facebook page for MP, both US and international. I encourage you to check those out because there are some good support systems there, but just know there is also a lot of complaining and a bit of drama. Grain of salt!
I have been diagnose with sclerosing mesenteritis , would like to understand more of this disease
Welcome, Mike. Knowledge is helpful in managing a condition like sclerosing mesenteritis. I moved your message to this existing discussion:
- Mesenteric Panniculitis or Sclerosing Mesenteritis: https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/
I did this so you can read previous helpful posts (there are a lot of them) and connect with members like @pcfromfm @praggs @nancykeenan @erincorn to name but a few.
How are you doing with the new diagnosis?
Since my gastro basically said "not my job" - they only work the colon - I'm trying to find somebody who understand MP. I had an abdominal CT which looked great except MP was discovered. What kind of doctor can I find who understands this. I am in the Evansville, IN, area. Thanks.
@mtp2008 MP specialists are rare. I see one at Mayo in Rochester, MN via teledoc because I live in AZ. I get all my tests done locally at Mayo and the results are uploaded to the portal. My doc can then review them, etc. Google MP specialists in your area. I know there were 2 in MN and 1 or 2 in FL with Mayo. Not sure about your area though. Most gastros know nothing about MP.
Thank you
Good feedback. I find several not too far in my google search who are listed as General Surgeons. Probably not the first choice since treatment of some sort may work. I will look at either Mayo Telehealth or possibly Cleveland Clinic Telehealth