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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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I too am searching for doctors who have experience with this disease! I’m willing to travel. MJ
From studying about the disease on NORDS (national order of rare diseases) It is related to potentially audio immune illnesses, such such as rheumatoid arthritis, which is what I’ve have. Nord says it’s more prominent with men, and some of that has to do with because there could be trauma to the back from types of heavy work that men do so trauma can also be a contributing factor to your back, such as a few bit, a bad auto accident, which I have. I wrote up earlier my circumstances, but I failed to mention that part of the CT scan did diagnose lymphoma. I have enlarged lymphoma in the back where Mysentetic is. Again for me it seems that the stages there is tissue necrosis you have active disease happening and there is just no treatments. I suspect things I’m dealing with the pain now, but at some stage the level of the pain is going to become just feel very very unbearable. I would venture to say that any young adult or high school student has no idea that they have a mesenteric organ in their body and how it functions and what they need to do to protect it. Let down by the rheumatid doctors that I’ve seen over the years as they should’ve been monitoring this and providing more effective rheumatoid arthritic treatments. So those are my circumstances and this information helps and you can also again share with educate others but I am half endeavored significantly over the years to do a lot of supplemental and dietary measures to improve my audio immune and put it into remission and there’s phases of it that I did do that very effectively, but this development of the necrosis of my tissue is quite unexpected. Doesn’t seem to be able to figure out how to get that treated and will likely lead to my death. MJ
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1 ReactionHello can I get a link to this group too please?
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I was just diagnosed with MP - by a catscan. So far, my PCP dismissed it as 'just fat in the abdomen.' I was a little shocked. I have an appt with a gastro next Thursday. I have back pain, bloating, my stomach feels big. My PCP said - do you have vomiting, or weight loss? I was like, no - so she said, ok you're ok then and dismissed the whole thing. Anyway I am on Colchicine for gout because my hands and feet started to swell in the Spring, and that really helps it. Not sure where to turn so if anyone has advice - I can go to NY, NJ, CT, Boston. . . or anywhere reasonable around me. If I have to go to MICHIGAN to the Mayo Clinic, I will but hoping I don't have to. travel that far. I have another rare condition so this is frustrating and I feel tired alot. -
Do you have Prolastin C infusions?
There are Prolastin C infusions for lung
I had a CT which revealed hazy mesentary with stranding and also hazy momentum. No tumors or lesions . Several retroperitoneal lymph nodes sub centimeter. Went to another Dr four days later with abdominal distribution and pain. Another CT obtained and none of the above findings were found. This radiologist explained it was increased mesentary fat but did not see stranding as the first ct was indicating.
Well I'm glad to talk to others after constantly searching to see if what I feel is normal for people diagnosed with sclerosing mesenteritis. I have lived with discomfort and pain most of my life due to infertility issues for over 18 years and that was 25 years ago and had many abdominal surgeries. My last 3 cat scans over last 3-4 years and visits to various qualified doctors including ruling out lymphoma at this point with an oncologist point to this diagnosis. My symptoms are as follows. I feel gas and bowel moving from place to place along with ripping sensations alot, sometimes a pain that takes my breath away although it dosen't last too long. Serious cramping at different times, of course bloating. I do get mid thoracic discomfort that I always thought was an old ski injury, however now that it's in the problem area, maybe it's related. Anyway it would be nice to talk to people that might have these symptoms so I know it's within normal limits. I am active and almost 70 🙂 No meds used as of yet. 🙂