Mesenteric Panniculitis or Sclerosing Mesenteritis

I tried to contact a Dr at Mayo in Jacksonville and you had to be on a 6 month waiting list! They couldn’t even add my name at the time. I had just been diagnosed. Told me to call back in a couple of months to add my name! Really....

Trying to get medical appointments in general is frustrating but dealing with specialized medical health has become a real challenge. The association with other diseases is so scary with MP. Has anyone's dr suggested Imuron medication?

Mine has suggested Humria. Trying to get insurance approved for it. Haven’t heard of this one imuron. Maybe it won’t be much longer on possibly getting something for my RA, OA and Fibromyalgia. Hopefully, this will also help my MP. It has been so hard to keep going daily. All I want to do is lay around. I go to work every day but some days I have to go home early. Which frustrates me! Ready for some relief!

I hope you get approval for the medication and that it proves helpful. Please let us know how you are doing

I have a mesentery neoplasm that is most likely sclerosing mesenteritis, but it has not been definitely diagnosed, because surgeons have not been able biopsy it due to its location at the root of the mesentery among major arteries and loops of small intestine. It was first discovered 11/10/22 when I went to the ER with a partial small bowel obstruction. I had CT scan of abdomen and chest and MRI of abdomen, which revealed a heavily calcified mass 4.6 cm x 4.2 cm x 3.6 cm. Lab tests (Cromogranin A and 5-HIAA) were done to rule out carcinoid. Ga-68 Dotatate PET scan was done and was negative (no radiotracer uptake of the mass or adjacent lymph nodes). I am scheduled to have a repeat PET scan in March to see if the mass has changed in size. While in the hospital I had a diagnostic laparoscopy. The female surgeon was able to insert her small hand in my abdomen and palpate the mass, but even with that there was no safe place to obtain a core biopsy. The surgeon stated that if the mass grows in size and leads to a complete bowel obstruction, "a small bowel bypass would be difficult and would likely result in short gut syndrome with <60-70 cm of currently uninvolved small bowel." So at the moment I am in a watch and wait status with no medications given and instructions to eat small portions frequently throughout the day. No symptoms of SBO lately. I am not in a lot of pain, just dealing with a constant sense of fullness/bloating and a noticeable distension of my abdomen. The mass seems to be interfering with nutrient assimilation. Serum calcium, albumin, and vitamin levels have been below normal so I am trying to compensate by eating lots of protein and taking supplements. The oncology doctor that I saw on January 5th ordered a serum serotonin level, thinking it might indicate a certain type of tumor if the level was high. However, it was low instead (17 ng/mL) where the standard range is 50-220 mg/mL I am wondering if this low level of serotonin could be interfering with my sleep and causing depression. Has anyone in this group had their serotonin level tested? (Serotonin is produced in the brain and the small intestine).

@dottiekelly1 I have also been diagnosed with MP and see an MP specialist with Mayo. I would recommend you try to do the same. He is not recommending a biopsy for me, stating it is not always necessary, but everyone's case is different. I think if you see an MP specialist, more of your questions will be answered. Bloating is a very common problem with MP. Things that trigger my flares are fried or spicy foods, sugar, alcohol, dairy. Decreasing stress is critical to decreasing flares and hydration is very important. Good luck!

Thank you for the helpful comments. I can eat most foods, even gluten and dairy, just not too much at one time, and I do try to chew everything well. Two foods I definitely avoid are candy and nuts. In November I ate a bunch of Snickers leftover from Halloween followed by snacking on a big jar of nuts (which I knew had given me problems before). I think this is what led to the small bowel blockage. Stupid me! This led to my hospitalization and diagnosis--which came as a complete surprise. Now I am trying to figure out how to deal with it.
Do you see someone at the Mayo Clinic at Rochester? How did you manage to get an appointment? Was there a waiting list? Just want to keep that in mind for the future. Rochester is a long way from Albuquerque NM. Arizona would be closer if there is a specialist there. For now I am seeing an oncology doctor who has never seen a case of SM/MP. I am just waiting to see if the PET scan scheduled for March will show any change in size of the neoplasm. If it is not growing, then I think I will be OK, but if it is getting larger, then it presents a problem -- since it cannot be safely removed. I do feel fortunate that I have not had any more blockages, so I must be doing something right! Being able to connect with others on this website is helpful.

@dottiekelly1 I have all my tests done at Mayo in Scottsdale and the results are then placed in the patient portal, literally before I get home from my appointments. My MP specialist, Dr. Conor Loftus, is in Rochester, MN. He reviews the results and then we have a teledoc appointment. He is fantastic! He switched up the meds regime I was initially prescribed and so far, so good. He recommends Miralax every single day without fail. It is over-the-counter and it will decrease your incidents of blockage.

Sounds like you have a really good arrangement with your doctor at Rochester. Glad you are receiving help for your MP. I am doing fine right now with no medications, but things could change in the future. I'm not sure what tests or medications would be helpful to me right now. I am hesitant to start new medications that might cause side effects. I took note of your helpful suggestion about Miralax. I don't need it now, but it may be useful in the future. Thanks for your reply.

Hi, not imposing on your conversation but I was diagnosed w MP in June - symptoms since March - coming up on a year. My team of drs are not familiar with MP & I am in process of trying for 2nd opinion. Did you actually go to Mayo In MN to see Dr ?
Thank you!!