Mesenteric Panniculitis or Sclerosing Mesenteritis

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

Hello can I get a link to this group too please?

Hello -
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.