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

@ellenos

I met with the GI doctor. He said he did not think my lower abdominal pain was related to MP – his experience was that MP takes a long time to manifest (for people with MP pain). My CT was not with contrast, so he has suggested trying Mirolax first to rule out constipation and if that doesnt work he will have a contrast CT done. Since I started CBD I am having no night pain – I found it hard to believe so I didnt take any last night to see if pain was still even there, and it definitely was. Maybe its enough of a relaxation to stop any cramping.

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I had inguinal and umbilical hernia surgeries prior to my MP diagnosis.
Have had 3 large painful boils on my upper groin/stomach area afterwards
too….not sure if that is related.

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@royal

I had inguinal and umbilical hernia surgeries prior to my MP diagnosis.
Have had 3 large painful boils on my upper groin/stomach area afterwards
too….not sure if that is related.

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Hi Royal – I have had skin lesions associated with my MP as well, they take forever to heal. I am going to a dermatologist to see if it is possibly related.

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@royal

I had inguinal and umbilical hernia surgeries prior to my MP diagnosis.
Have had 3 large painful boils on my upper groin/stomach area afterwards
too….not sure if that is related.

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Could be a contributor.

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@lisas444

Hi JimmyMac –

We have 58 people in there now as Erin from this Mayo site joined up with us last week and I added her to it. We are on Facebook and a SM/MP medical group. It’s a closed/secret group so we can all talk and discuss freely about meds, pain, bowel issues, support, venting, laughter, etc. One of my daughter’s docs is in our group as well. My kiddo is currently back in patient on Saturday and still in unfortunately. My name is Lisa Schwart and I am on Facebook, in Tulsa, Oklahoma. If you give me your full name as well and City I can find you and add you as a friend. You aren’t able to “search” the SM group as we have it locked down specifically for everyone’s privacy. I’ve been putting together a database for each person with their doc names in each state etc as a resource for everyone as well! 🙂

Lisa

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Was just diagnosed March 15th, I'm in Belton, Mo–KC Area

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Hi everyone! Has anyone discussed with their doctor or researched stem cell therapy for MP?

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Hi, I'm new here and was just diagnosed with MP after 3 months of pain. My GI doctor says that he thinks too many people are being diagnosed with MP that do not have it and that it ISN'T rare which goes against everything I've been able to read thus far. My CT scan was the cause for my diagnosis and they found it without contrast because I can't do contrast because of kidney disease. I'm thinking he may be a little cavalier about my problem and I'm thinking about getting a 2nd opinion, possibly at the Mayo in Jacksonville Florida. Has anyone here been to that facility for treatment? If so, can you recommend a doctor for me?

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@floridamike

Hi, I'm new here and was just diagnosed with MP after 3 months of pain. My GI doctor says that he thinks too many people are being diagnosed with MP that do not have it and that it ISN'T rare which goes against everything I've been able to read thus far. My CT scan was the cause for my diagnosis and they found it without contrast because I can't do contrast because of kidney disease. I'm thinking he may be a little cavalier about my problem and I'm thinking about getting a 2nd opinion, possibly at the Mayo in Jacksonville Florida. Has anyone here been to that facility for treatment? If so, can you recommend a doctor for me?

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Hi I was diagnosed through a CT scan with contrast, had and still do a pain in my right lower stomach, the doctor reading scan said I had MP. When I finally got to have a conference call with him. He does not believe I have it. He thinks it is IBS. Well he told me to taken tsp of Metamucil once a day. I still wake up with the pain or discomfort every morning. I did go about a week without it. I definitely have better stools. I hate the idea that every morning I awake with this discomfort but if I get up and walk around it starts the gas moving and I go to the bathroom, pain goes away until next morning. If you find out anything different pls let me know…

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@nancykeenan

Hi I was diagnosed through a CT scan with contrast, had and still do a pain in my right lower stomach, the doctor reading scan said I had MP. When I finally got to have a conference call with him. He does not believe I have it. He thinks it is IBS. Well he told me to taken tsp of Metamucil once a day. I still wake up with the pain or discomfort every morning. I did go about a week without it. I definitely have better stools. I hate the idea that every morning I awake with this discomfort but if I get up and walk around it starts the gas moving and I go to the bathroom, pain goes away until next morning. If you find out anything different pls let me know…

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Well, I'm going to believe the radiologist over the doctor, especially when he says everyone is getting this these days. I think I'm going to make an appointment with Mayo Jacksonville to get a second opinion s from what I understand it could be a symptom of something greater and I don't want to take a chance on something sneaking up on me that's worse.

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Hello @floridamike and welcome to Mayo Clinic Connect. You seem motivated and interested in seeking a second opinion to rule out any additional and potential reasons for your symptoms.

You may use this link to request an appointment: http://mayocl.in/1mtmR63

Will you keep us posted?

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@lisas444

Hi JimmyMac –

We have 58 people in there now as Erin from this Mayo site joined up with us last week and I added her to it. We are on Facebook and a SM/MP medical group. It’s a closed/secret group so we can all talk and discuss freely about meds, pain, bowel issues, support, venting, laughter, etc. One of my daughter’s docs is in our group as well. My kiddo is currently back in patient on Saturday and still in unfortunately. My name is Lisa Schwart and I am on Facebook, in Tulsa, Oklahoma. If you give me your full name as well and City I can find you and add you as a friend. You aren’t able to “search” the SM group as we have it locked down specifically for everyone’s privacy. I’ve been putting together a database for each person with their doc names in each state etc as a resource for everyone as well! 🙂

Lisa

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Hi there, could you add me? I just had a laparoscopy done last week to diagnose endometriosis. On the report, I saw Sclerosing Mesenteritis as one of the diagnoses… I’m so confused what this is and would love to hear from others. Thank you!

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@kckat

Was just diagnosed March 15th, I'm in Belton, Mo–KC Area

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I’m from KC too! I recently moved to Austin, TX though and that’s where I had my laparoscopy and received a diagnosis of Sclerosing Mesenteritis (and several other diagnoses).

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@lauramolzen

Hi there, could you add me? I just had a laparoscopy done last week to diagnose endometriosis. On the report, I saw Sclerosing Mesenteritis as one of the diagnoses… I’m so confused what this is and would love to hear from others. Thank you!

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Hello @lauramolzen and welcome to Mayo Clinic Connect. I can see you have reached out to @lisas444 with interest in joining a group she has.

Mayo Clinic Connect members who may be able to help with your questions include @nancykeenan @kccat @constancelee .

Did you doctor mention the SM to you and talk to you about it?

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