Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

How did you contact the dr at the Mayo ? Do you have an email address? I have MP . thxs for any help

Hello Everyone!

I was just diagnosed with Mesenteric Panniculitis last week. I had been having abdominal pain also with other symptoms the past 8 weeks that had been worseing over time. I had gone to my PCP and also my G.I. and I didn't feel they were listening to me. They kept talking about my acid reflux even though mine has been well controlled for several years now. I ended up going to the ER and had a CT scan which confirmed the diagnosis. I have since showed the findings to my GI doctor, and he is now taking things more seriously. I'm still pending the results of my blood work that's testing my inflammatory markers. Currently my doctor wants to wait the next 4-6 weeks to see if it will magcially go away on it's own. Will repeat the CT scan at that time, and will most likely do a biopsy. I've been inm so much pain and I'm hardly eating right now. I have lost 10 lbs in a little under a week. Don't get me wrong the wightloss is a good thing, but not in this scenario. My GI wants to hold off on steroids for the time being and has given me Tramadol, Librax, and Hyoscyamine Sulfate to see if it will help with the abdominal pain. A little back story on me, I have Celiacs Disease and my mother was recently diagnosed with RA. From what I've read, people with auto immune disorders in their family can mean you have a higher liklihood of contracting MP. I feel like I need to vent since I'm pretty worried. Based on what I've described, does this sound like a good medical plan for the illness or should I seek a second opinion with another doctor? I'm only 29, and not sure how many other people in my age group have been doagnosed with this.

@musicflowers4u

Hello, I just noticed in your post that you mentioned Carcinoid cancer. I wanted to take the opportunity to invite you to share in our NET discussion group. Here is the link to our NET discussion, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/tab/discussions/

Most of us feel like you do - we are fortunate that this rare disorder was found, one way or the other. One word of caution, though, I see that you were told to continue the follow up for 10 years, however, on my 11th year (after my 2nd surgery) I had another NET appear - it is better to keep the surveillance going longer than necessary to ensure that you stay free from NETs.

I would be interested in hearing about the results of the Gallium-68 when you have it.

I look forward to hearing from you again.

Teresa

My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago area and are wondering if anyone can recommend a doctor in our area? Her GI doctor is unfamiliar with the condition and dosent really know what to do. We are in the process of researching doctors but as a lot of you probably already know not many doctors can help with this disease! Hope to hear from someone soon ,thanks!

I had a biopsy for MP and it was confirmed, been on steroids 6 mths, now off, only on tomoxefen. I have blood tests to check for Tumours. I am getting cramps Under my chest. Not sure what that is all about. Just been for another Ct scan.

Contact Dr Glenn Alexander or Dr Pardi, both in the Gastrentetology Dept at Mayo Clinic, Rochester, MN. The contact info can be googled. You need to write a letter describing your symptoms, the tests you have had and results. Ask for an appointment. You will be contacted with a date and time. They do not want any records or images sent to them, you bring them with you for downloading at that station. You will receive a schedule with bloodwork first. They will tell you to plan for a 10 day stay for tests and any exploratory surgery, etc. I suffered with MP for many years. During exploratory I was diagnosed with Carcinoid Cancer which surprised everyone. Good luck. It was the best decision I could have made. I am a Stage IIIB rare cancer survivor. They saved my life.

@musicflowers4u and all others with MP, can you tell me how MP is diagnosed? What tests in particular were done?

I am currently inpatient at a hospital I got admitted from the emergency room. It has been 10 days now and I have had an EGD, Chest x-ray, CT scan of abdomen and pelvis with contrast, a laparoscopy, and countless amounts of blood tests. The doctors tell me I have something very rare and she has never seen it her entire career. Biopsies were taken during the laparoscopy and I am still waiting on results to see if it is cancerous. I am not being told much so I reviewed some of my procedures to see if I can get answers. I found that the radiologist may think it is sclerosing Mesenteritis Which was found in my CT scan. Every other test has come back unremarkable, the only thing they see is thickening of the Omentum But are unable to find an underlying cause. They also found I have bilateral plural effusion, which they performed thoracentesis to remove the fluid In the right side plural space. It was tested and found negative for malignancy unable to find the cause of why the fluid was there. I decided to go to the emergency room after having excruciating pain in my abdomen for about a month and difficulty breathing which turns out to be from the pleural fluid. The pain in my abdomen started off on my lower left side but has really moved all around. The pain seems to get worse at night and in the morning. I am a 42 year old male with no major medical history besides a ruptured esophagus that has been repaired. I also have peptic ulcer disease and just discovered I also have H. Pylori. Has anyone else been diagnosed with sclerosing Mesenteritis? What where your symptoms? I feel like I am going to leave the hospital with no answers or help because they can’t officially diagnose me.