1. < Digestive Health

Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @billymac65, Dec 6, 2012

I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).

I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?

Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!

Bill

Interested in more discussions like this? Go to the Digestive Health Support Group.

paulalee | @paulalee | Sep 13, 2018
In reply to @billindc "Thanks so much for responding. I can only say that we all have to "hang in..." + (show)
@billindc

Thanks so much for responding. I can only say that we all have to "hang in<br />
there"! J No other alternative. I wish Rochester, MN was closer to DC.<br />
Apparently not much going on up at Hopkins in the way of research, but I<br />
received a nice email from a doc at Mayo who was willing to make himself<br />
available to speak to my GI doc in DC.what a nice thing to do. ~Bill<br />
<br />

Jump to this post

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

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1 reply
musicflowers4u | @musicflowers4u | Sep 15, 2018
In reply to @paulalee "How did you contact the dr at the Mayo ? Do you have an email address?..." + (show)
@paulalee

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

Jump to this post

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.

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1 reply
musicflowers4u | @musicflowers4u | Sep 15, 2018
In reply to @jaimeworth89 "Hello Everyone! I was just diagnosed with Mesenteric Panniculitis last week. I had been having abdominal..." + (show)
@jaimeworth89

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.

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Can’t impress on you to take this on aggressively and find a specialist. See my post about contacting Dr Alexander or Dr Pardi at Mayo Clinic, Rochester, MN

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musicflowers4u | @musicflowers4u | Sep 15, 2018
In reply to @hopeful33250 "@musicflowers4u Hello, I just noticed in your post that you mentioned Carcinoid cancer. I wanted to..." + (show)
@hopeful33250

@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

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My Gallium 68 Dotatate scan did not show any new neuroendocrine cancer. I am thankful. I have however been diagnosed with hypothyroidism and am now concerned it might be related to so much radiation over the past three years. Currently on low dose if thyroid Med.

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musicflowers4u | @musicflowers4u | Sep 15, 2018
In reply to @jimbo91372 "My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago..." + (show)
@jimbo91372

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!

Jump to this post

Best doctors are Dr Alexander and Dr Pardi at Mayo Clinic in Rochester, MN. Google contact info, send letter with symptoms, test results. Request appointment.

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musicflowers4u | @musicflowers4u | Sep 15, 2018
In reply to @jolied "I had a biopsy for MP and it was confirmed, been on steroids 6 mths, now..." + (show)
@jolied

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.

Jump to this post

Highly recommend Dr Alexander or Dr Pardi to see if exploratory in order at Mayo Clinic, Rochester, MN. Google for contact info and instructions.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 15, 2018

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

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 15, 2018
In reply to @musicflowers4u "Contact Dr Glenn Alexander or Dr Pardi, both in the Gastrentetology Dept at Mayo Clinic, Rochester,..." + (show)
@musicflowers4u

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.

Jump to this post

@musicflowers4u
Wow, what a great report! Thanks for sharing that information.

REPLY
kimh | @kimh | Sep 15, 2018
In reply to @hopeful33250 "@musicflowers4u and all others with MP, can you tell me how MP is diagnosed? What tests..." + (show)
@hopeful33250

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

Jump to this post

I had a couple of CT scans and eventually surgical biopsy to rule out lymphoma. Luckily, I only have MP.

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 29, 2018
In reply to @jcdeep "I am currently inpatient at a hospital I got admitted from the emergency room. It has..." + (show)
@jcdeep

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.

Jump to this post

Hello @jcdeep, welcome to Connect. I am sorry you are having trouble getting answers and trying to find out what to do next. I am tagging our moderator @kanaazpereira to see if she is able to move your post and combine it with the following discussion where you will be able to meet other members who share your symptoms. In the meantime you may want to read through the discussion to see if you can find any answers.

Groups > Digestive Health > Mesenteric Panniculitis or Sclerosing Mesenteritis
-- https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

@jcdeep have you found anything that helps you cope with the symptoms?

John

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