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

Hello all! Just diagnosed with SM on 2/26. Going to see my GP on 3/1. Can remember almost the exact day I acquired it. Came down with a myriad of symptoms. Drs. patted me on my head and told me to go home. 3yrs. later here I am. 36yr. old male Duluth, MN

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@gabrield

Hello all! Just diagnosed with SM on 2/26. Going to see my GP on 3/1. Can remember almost the exact day I acquired it. Came down with a myriad of symptoms. Drs. patted me on my head and told me to go home. 3yrs. later here I am. 36yr. old male Duluth, MN

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Hello @gabrield , I hope you are doing well despite the diagnosis and we all welcome to the Mayo Clinic Connect. We are glad you chose to join the group.

We understand and have experienced many of the struggles all too typical of this disease. Maybe we can help should you have questions.
@vdouglas
(Von)

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Is there any actual difference between SM and SP?

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Hello @gabrield , That is a very good question and one that is not easily explained. SM and SP seem to be used universally and I’m not sure if there is any difference at all in recent terminology. I have read that there are three stages to the disease, and having the first doesn't necessarily mean you will progress to the third stage. Documentation to support this can be found here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2726466/

There is some additional information that could explain the difference between the two. Here is an excerpt of that information: "It can be categorized according to three pathological changes: chronic nonspecific inflammation, fat necrosis and fibrosis[2]. This varied terminology has caused considerable confusion, but the condition can now be evaluated as a single disease with two pathological subgroups. If inflammation and fat necrosis predominate over fibrosis, the condition is known as MESENTERIC PANNICULITIS, and when fibrosis and retraction predominate, the result is RETRACTILE MESENTERITIS. The overall presence of some degree of fibrosis makes the pathological term SCLOROSING MESENTERITIS more accurate in most cases[3]". You can find that information here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2726466/

I hope you are doing well, does this information help?

@vdouglas
(Von)

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Yeah thanks. Talked to my Dr. he acted like it's no big deal, no need to see a specialist or anything. I kind of question that decision.

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@gabrield, yes very common because they don't understand the disease. If you are having symptoms, or not having symptoms, you may want to see a specialist who understands the progression of this disease. Even if it is just for peace of mind knowing what organs, if any, are affected. The Mayo Clinic Gastroenterology Department in Rochester Mn. is well versed in evaluating the disease. Once again, there is no cure, but there is treatment or no treatment at all required if your symptoms are manageable and the disease is not progressing.
I hope you are doing well and best wishes to you. Are you managing alright?
@vdouglas
(Von)

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@gabrield

Yeah thanks. Talked to my Dr. he acted like it's no big deal, no need to see a specialist or anything. I kind of question that decision.

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I understand the frustration, my own PCP had the same comment. He's very clueless and seems not to want to be educated on my condition. I had asked to be referred to a doctor with some experience but he decided on his own to contact top doctor at Dartmouth Hitchcock. He then came back to me regarding a slew of medications for me to try. I had asked him do to my allergy to certain NSAIDS would these affect me, and of course he stated, well I'm not sure. So I was officially diagnosed with MP 1/2016 and still cannot find a medical professional with any education on the subject. I've had 2 severe attacks and 2 minor attacks of MP, hoping never to have another one.

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In New England, we do have some pretty fine medical facilities, but for MP it hasn't been a yellow brick road to knowledge and treatment.

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Hi @skywave,

I moved your post about finding informed practitioners for MP, and combined it with this existing discussion. I did this as I thought the other members in this group would also appreciate your insights.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the conversations by members discussing similar questions and concerns.

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I am so sorry so many are in such pain with this illness. I count myself lucky. My pain began around 2009. Around five doctors (specialists in gastro, surgeons, primary, etc.) had consulted with over the years. Various ultrasounds and CR scans resulted in diagnosis of messenteric panniculitis. All of the doctors indicated MP to not be of any concern. Only in 2016 when I read my own report from a CT taken at a hospital ER when I drove myself there in great pain did I find out I needed a biopsy for enlarged lymph node in the mesentery. I sought out a doctor at a major hospital who considered himself knowledgeable in MP who did endoscopy on a lymph node which proved negative. I continued in pain. It was through a blog, and prayer, that I learned of Dr. Pardi and Dr. Alexander at Mayo Clinic in Rochester, MN. I consulted with Dr. Alexander who called in a specialty surgeon after an exploratory was my choice of three options. Dr. Kellogg and his team were at my bedside when I awoke from surgery. I was told they had removed three feet of small bowel, 12 tumors and 13 lymph nodes (six of which tested positive) for Stage IIIB Carcinoid Cancer. Dr. Alexander said although they usually would look for lymphoma in cases like mine, they are often surprised at a different outcome and so they were surprised. I was given names of oncologists to whom they would refer me for follow-up and I chose to go to Dana Farber Cancer Institute where I have blood work every six months and scans once a year. I have had CT and Octreotide shot and scan so far and so far no new cancer. So far no need for medication. I will be followed for a total of ten years. Although my other organs were scanned for metastasis and proved negative, my fatty liver scans are too obscure, so I am seeking the Gallium-68 scan next. Previously used elsewhere in the world for neuroendocrine tumors it is now available in the US. A blog, prayer, and the doctors at Mayo in MN saved my life. Had I not been my own health advocate and refused to accept other (local) surgeons claims that it was impossible to remove the lymph node in the very difficult location in the mesentery (Dr. Kellogg was able to remove that and more), only God knows what stage I would be at now. So I thank those Mayo doctors and my Lord God, and a blog. Dr. Alexander said messenteric panniculitis can be a symptom of an underlying illness, which was the status in my case. So, please, don’t give up. And know that my case was atypical. Colonoscopies do not usually find Carcinoid Cancer, I had stuck to a routine colonoscopy schedule. Most Carcinoid of the small bowel is found during an autopsy as most cases don’t present with pain until the cancer is far along as mine was. Do not quit seeking answers!

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Note typo (CR should be CT).

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@musicflowers4u, Welcome. Thank you so much for sharing your story. I love when patients talk about strong advocacy- it's exactly what we should all be doing. Congratulations.

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