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!!
Interested in more discussions like this? Go to the Digestive Health Support Group.
@vivaIf viewing this on the Mayo Clinic Connect, there should be a “Make An Appointment” button in the top right hand corner. Click that button and fill out the information required to make an appointment. You need to request Mayo Clinic Rochester Mn, Dr. Darrell S. Pardi and specify that you would like a consultation and/or treatment for Mesenteric Panniculitis or other variations of the same. You will be contacted. You will almost certainly need to send them a copy of your CT(s) and reports so I would call your radiologist or the radiology/imaging dept. at the hospital and request a copy. The first copy is usually provided free, you may be charged a small fee for the second. I would get two because you need to keep one in your file at home. If you want things to move quicky try to prepare all of this in advance. You will be contacted again after the CT and any other requested information is evaluated. Be advised you are requesting a service around this point and your insurance or Medicare may be charged for consultation. I don’t know this as a matter of fact, I would just expect it as a very qualified individual will be reading your CT. This information may become part of your History at a very reputable Clinic to establish your baseline for any future needs. You really need to establish a baseline to be able to see how your Mesentery changes.If you are trying to do just a consultation based on your CT reading let that be known up front that you cannot travel and want your doctor to be advised. I went to the Clinic so I don’t know if this will work as a remote consultation. There may be legal issues that prevent it, but it is worth a try.@vdouglas
Sorry I got ahead of myself, apreciate the much easier path to make an appointment with Dr. Pardi.Please let me know if I am stepping out of line on the site. I have been where a lot of them are and it is so very frustrating. I personally feel it is necessary to see Dr. Pardi not only for guidance but for historical documentation on a personal level and for the whole. I do not know what is actually crossing the line.Best Regards@vdouglas
I appreciate your help and assistance. My journey started out recently with a CT scan and something my doc called Misty Mesentery. He said it sound like a “lady of the night” disease. Of course I left his office and found another doc who charged lots and said basically to have a food allergy test. So I did…and I came up with a slight allergy to Wheat/gluten. I have pretty much removed all this from my diet and still have the bloating etc. However, sooner or later I will have to make an appointment with Dr. Pardi. For what it’s worth, I have learned more from Lisa’s FB group and this group then the 4 doctors I paid lots of money to see. No pain or bother just need to eat small meals as I feel I digest it better. I eat whole foods and mostly plant based which has made a difference for me.
Thanks to everyone for the advice and priceless information. Will definitely post back with the result.
@snoopdogHey, I’m sorry you are going through this. Pain is a horrible thing to deal with and can really make everything seem hopeless. It’s easy for me to say that right, I’m not the one in pain right now. But there are people that understand and care. We are just as helpless at times. Have you been seen by any Gastroenterologist? Did you have a CT scan? What was read on your CT? Please let me know.vdouglas
Dear Snoop Dogg, please feel free to private message me. We have a private medical group with approximately 290 members with MP and SM in it. It’s a private Medical Group. We have multiple people in Florida that I can Network you with with their doctors and Hospital facilities. You can reach me on Facebook at Lisa Schwartz in Tulsa Oklahoma.
Ops em come out wrong. Lisa
What shows up on the ct scan?Nancy Shermoen~
Inflammation. In my case, inflammation of the lymph nodes near the mesentery.
Mine is edema and inflammation of the mesentery. I am having a lot of pain with this.