Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

Can anyone please share how they got diagnosed with this disease and what your medical findings and symptoms were.

Hi @jcdeep,

I can imagine how worried you must be, and I want to thank you for reaching out to the Connect community. Living with a chronic condition can be so difficult and frustrating. Here is some information about Sclerosing mesenteritis care at Mayo Clinic, which I would encourage you to read:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-2035509vdouglas
You may notice that I moved your discussion and combined it with this existing discussion on sclerosing mesenteritis as I thought it would be beneficial for you to be introduced to the many members in this group – I'm tagging @kimh @jaimeworth89 @doron @musicflowers4u @warlick @sjean @pcfromfm @fernandoparce @cconnors @bertbiz @vdouglas who've also been living with MP and who would be happy to answer your questions.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

@jcdeep, as you will read, sclerosing mesenteritis is rare, and it's not clear what causes it; has your current healthcare team in the hospital given you an explanation for what's causing the pain? Have they prescribed any pain medications?

I have not been officially diagnosed. I was discharged from 10 day inpatient stay with no answers today. I found this disease by reading my The impression from the radiologist on my CT scan. One doctor that I saw suggested I go to Mayo Clinic because they will better understand and have the ability to diagnose. I was discharged with tramadol and prednisone.

I am a 66 y old woman. With MP. Diagnosed end of 2017 from keyhole examination, after CT scan showed thickening around the bowel Messentry, went on steroids for 4 mths, but due to their effect on my bone density had to come off. Am still on tomoxefen, indefinitely. My symptoms were pain in stomach and cramps. I am not too bad at present, although last month I had a month of bad cramps. I am under a gastrointestinal specialist in Aussi. I get really tired if I do too much bending / gardening etc, so have to pace myself. Some say this condition can just go away....I’m hoping for that,...for you too !

Hi @jcdeep,

Mayo Clinic doctors care for more than 200 people with sclerosing mesenteritis each year, and have a lot of experience diagnosing and treating this rare condition.
Also, Mayo Clinic in Rochester, Minnesota, ranks No. 1 as the best gastroenterology and gastrointestinal (GI) surgery hospital in the U.S. News & World Report Best Hospitals rankings.

If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

I had a laparoscopy which seems to be the same thing as a keyhole exam. During the procedure they saw the thickening but did not diagnose me. I as well had a CT scan that showed thickening around the bowel Mesentery. My symptoms are cramping in the abdomen as well. Not sure why I couldn’t get a diagnosis! One thing that seems different with me is I have bilateral pleural effusions with unknown cause. Has anyone else had this? Thank you for the feedback!

Have you gone to the Mayo Clinic? I have been diagnosed and am on Prednisone, tamoxifen and oxycodone for pain. I have been out of remission for over a year now and still symptomatic unfortunately. It may be time to look at some immunosuppressant medications....

Hi JC, I have been tentatively diagnosed with MP from an MRI. I get an MRI every 2 years for recurrence of IPMNs in my pancreas. I too have more pain at night and especially the morning. Being horizontal is my biggest provocateur. Mine was probably caused by numerous abdominal surgeries. Unfortunately no one biopsied my panniculitis during the surgeries, they just wrote "dense fibrous adhesions". Now no one is willing to go back in to get a biopsy. I sense they think it's all in my head. I've been on prednisone for a week without any improvement. The NSAIDs helped but my stomach/bowels can not tolerate them. Acetaminophen helps. Pain meds are very hard to obtain in my state. I can't eat large or hard to digest meals. Apparently biopsy is the gold standard for diagnosis. Did you get your biopsy report?

@steve_b

I can relate to the horizontal pain. I toss and turn to find the right position bto ease the pain, sometimes morning comes and I feel like I'm still trying to fall asleep. Two CT scans, the second with contrast, showed numerous enlarged lymph nodes throughout with Mesenteric root showing increased attenuation and encapsulation. My pain radiates out from kind of my left side out to entire abdomen. Sometime it feels like pressure pointing in, sometime like alien trying to bust out. I was given Prednisone treatment once and I had some relief, but now my gastroenterologist and primary care want to send me to pain management and follow up CT in March (6 months). All my blood tests have been normal, liver, kidney, normal. Ultra-good good colonoscopy. Everything hurts, nobody cares.