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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! I need the biopsy next to confirm! My primary Dr acts like this all no big deal. Which is super ANNOYING 😡
Thank you! I'm just so happy to find people are going through what I am! I haven't felt good in so long and still dont 😣
....until he gets it!!!
If you are on the proper meds, it should be helpful. In my case, it has become chronic. Good days and not so good days...
Same with mine.
Oh my Brandy, careful what you wish for. I went in for a biopsy (lapro) and ended up with a 12 inch incision and a 5 day all inclusive at the hospital. He had a hard time finding it and figured he’d do a resection anyway. Thank God he decided against that! He would have done more damage. So I had all that fun for a simple biopsy because people in NE have never heard of SM. Frustrating.
Morning! I agree. I had a team of Doctors at the University Hospital and they told me not to have a biopsy. I didn’t need the trauma to my system to diagnose. It would cause many more issues. I had “a perfect halo” on the CT. They mentioned it to me twice so I have not done that. Hugs and be careful! Happy Holidays all! ❤️
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1 ReactionFrom what I've read I just though you had to get that done to confirm diagnoses and to rule out any other underlying issues???
A ct scan is usually enough to diagnose. In my case, my inflammations grew to sizes over a quarter, in less than a week. It was because of this growth that I ended up having a surgical biopsy to rule out lymphoma (which it did thankfully!).
Have you been tested for Alpha-1 Antitrypsin Deficiency disease? It's a rare inherited disease that affects the liver & lungs. I have Alpha-1 & I'm liver affected & my sibling is lung affected. Panniculitis is a subtype autoimmune disease of liver patients with affected Alpha-1. There is no cure for Alpha-1 other than undergoing a liver and/or lung transplant. There is a treatment available for mesenteric panniculitis which is corticosteroids such as azathioprine (Imuran).