Mesenteric Panniculitis or Sclerosing Mesenteritis

Have you considered asking your internist if they recommend a second opinion?

I am only 34 years old and I was initially diagnosed with Sclerosing Mesenteritis in Oct 2020. I have been very very sick, and in pain ever since. I have seen 10+ specialists, including The Mayo Clinic in Rochester. In April of 2021 I had laprascopic surgery with a biopsy of my mesentery that confirmed the diagnosis of Sclerosing Mesenteritis. I am currently applying for disability and waiting an answer while I continue work up with Mayo and OHSU (here in portland, OR). If anyone has advice or help about disability insurance or anything else, i would greatly appreciate it. We have tried Azathioprine, Amatryptyline, Prednisone, Gabapentin, and more. We have not tried Tamoxifen because during one of my many hospital stays it was found that I had a stroke at one point in the last 5 months to 5 years (they dont know how old it is). My wife and I are at a loss of what to do next. We are discussing Functional Medicine. Currently the plan is to get me off Oxycodone for pain and try other non-narcotic medications as this may be exacerbating my symptoms. Any advice, espeicially with disability, would be greatly appreciated. Thank you all so much. I am so happy I found this site.

Hello there,
I am new on this site. I am looking for HELP!!! I am 54 years old and have had upper right abdominal pain now for years and years. I had many tests, scans, etc... over the years. (not to mention having seen different specialty doctors). Around 14 years ago I had my gall bladder removed due to it being "non-functional". A partial hysterectomy followed soon afterwards. Still, I've struggled over the years with occasional flareups of severe pain that nothing seems to help. It has been debilitating at times. During my latest episode of pain, my husband came home to find me screaming in pain not able to move. It was horrible. Two years ago my gastro doctor told me I have celiac disease (along with a prior diagnosis of GERD, and IBS) I also have pretty bad allergies and food intolerances, specially to plants (mostly raw) The allergist called my condition "oral allergy syndrome". I'm still trying to figure out what to do with that diagnosis. Over the past two years I've been on a gluten free diet and have done pretty well with the bloating issue. However, I am still having 2 or 3 episodes a year of severe pain that lasts for usually a month and with it comes bloating and constipation. I went to the ER last September due to severe episode of pain and constipation. Tests showed that I have Mesenteric Panniculitis. The gastro doctor and the ER doctor don't really know what to do about the diagnosis. I've been on steroids, antibiotics, and meds for abdominal cramping. Nothing works. I'm currently in pain and taking Ibuprofen, etc... for the pain. I'm getting so very tired of this stuff happening. I am a very active mom who likes to build, hike, hunt for arrow heads, etc. (also ADHD, ofcourse) My daughter and I have a camping trip next weekend where we will be hiking in the mountains. I hope to God I'm not feeling like I do now. I describe the usual pain as what it feels like to go swimming right after eating a huge meal. You know that hard stabbing cramping feeling? That is the constant pain i have and then certain movements trigger the feeling of being stabbed in the gut. I tend to breathe shallow because it hurts to breathe in deeply. I looked up info about Mesenteric Panniculitis and realized how rare it is. I hope to connect with anybody who can give me advice or reassurance. I'd really appreciate any feedback. Thanks! Jessica McRee Grabert

How does one find the underlying cause of misty mesentery at the mesenteric root secondary to mesenteric panniculitis? MRI and CT scan picked this up and I'm not sure what kind of specialist would be able to help me.

@dwholey - you need to see a mesentery specialist because most other doctors have never even heard of MP. Mayo has 3 of those specialists, I believe. 2 in Rochester, MN and one in Florida, last time I checked. I also have MP. You can do tests at your local Mayo and the specialists can do Teledoc appts with you.

Yes I was recently diagnosed with MP and dealing with nausea and pain- hard to eat.
Have an appointment we a gastroenterologist on Monday. This is stressful

@lobell2 I found that most gastros have no idea what MP is. I initially saw a gastro and she, as well as her practice partners, had no idea what to do. I then went to the Mayo system and found an mesentery specialist. I was diagnosed over a year ago and with the help of my specialist I have very few symptoms, but I am very careful every day what I heat, I exercise, hydrate a lot, get lots of sleep, destress your life (this is huge!), take Miralax daily and if that doesn't work I have Constulose. My other meds are Oxycodone if/when the pain is unbearable (took twice in the last year), as well as Dicyclomine and Ondansetron if I feel symptoms coming on. I hope you find someone who can help.

Wow, we have the same very similar story!!!!! Did you have bloating? And it's very painful.

@lobell2, how did your appointment go last week?

The GI doctor listened and took notes. He doesn't want to say MP as the CT showed. Wants to rule out other things..so have to have colonoscopy and another test - but can't get in until June 22.
Just dealing and trying to push through. He said if the pain gets worse go to ER.. I laughed and said I am here trying to get help- what could an ER doctor do? Well if you need pain meds..I told him I wasn't seeking pain medication.. I want answers.
I know my comments are one sided -how I feel and understood the appointment.
I guess I have to deal with it and wait. The pain is now a dull ache in the side and I have been eating more.