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
Interested in more discussions like this? Go to the Digestive Health Support Group.
Maybe your pain has to do with scar tissue?? I have heard that MP can come on after abdominal surgeries. My MP was first diagnosed by CT, and subsequently by surgical biopsy to rule out anything worse (lymphoma). So in my case, MP was the better diagnosis.
What did they biopsy? A piece of the mesentary or did they see something to biopsy. Mine was diagnosed by a CAT scan too. No other visible lump or anything. Blood work was all,okay. Can You let me know what they biopsyied please. He did not even mention that... Thanks
I'm guessing (sorry!) part of the mesentery??? They had cameras set up so that they could use the biopsy as a teaching tool! Usually, they can diagnose from a CT, but I think in my case, they wanted to rule out other things.
Thanks for responding. I am not sure what you are asking me. I am from Ontario, not sure what a patient portal is? Or whose nurse. Sorry but I only have my family doctor. Can you help me understand? Thx
@nancykeenan, some doctors have online services where you can submit a followup question. I know of some family health team in Ontario that do this. I thought that you might be seeing a gastro specialist and sometimes they have number you can call for followup questions. Since you are in Ontario, you should contact your doctor to get clarification on your questions as OHIP insurance will cover the cost of the followup phone call or visit.
Hi there ellenons, you pls let me know what your gastro doctor said. I was diagnosed with CT scan with panniculitus and I have pain or discomfort every night between 3-5 am have a bowel movement and it goes away until next night. When my gastro doctor saw it said I have IBS. Will be interested in your doctors opinion....will watch fir your response. Thanks Nancy
I will share definitely! Pain is worse for me also between 3 and 5 am. Last night was the first time I slept well since it started, the only difference was I took CBD. I have taken it in the morning for anxiety for a few years, works wonders for me. I will switch to PM but it could just be I was so tired.
@ellenos is that the only time you have it? As soon as I can have a bowel movement mine goes away until next night.....I have no other symptoms at all. I can pretty well eat what I want even....I will be waiting with interest to see what your doctor says. Ask if it could be IBS if they found nothing else wrong.
The CT scan results showed nothing but MP. I have a gluten intolerance - my primary care did a genetic test and it showed positive for the celiac gene but blood test showed non-celiac. She was curious so had me do eat gluten for a few months and then have me do a biopsy of my colon. My colon was fine but it really killed my stomach - I had an ulcer. I was in a lot of pain eating gluten, in my opinion a lot of people are intolerant and don't know it. Doctors seem to think if you don't have celiac then you don't have an issue.
I hadn't heard about a place for follow up questions here...