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

@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

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I am just testing to see if I can post. I tried and had no luck a second ago.

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@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

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Hello @vivaHello and welcome, sorry you have to deal with this condition. I also have MP.I am curious, were you recently diagnosed with MP because you had a CT scan and it showed up on the scan? Was this an ER visit? No pain is certainly a good thing.Wishing you well@vdouglas

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@bertbiz

I was diagnosed with MP May of this year. I understand you pain and fatigue. You are not complaining, you are stating how you feel. What kind of treatment have you gotten?

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I have a x ray and mri say I have LINEAR METALLIC DENSITY OVERLAPPING MY ABDOMEN. WHAT IS THIS in regards to the mesentery panniculitis?

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@bertbiz

I was diagnosed with MP May of this year. I understand you pain and fatigue. You are not complaining, you are stating how you feel. What kind of treatment have you gotten?

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If you get any answers let me know what you learn. Long ago I remember reading this on a X-ray or ct scan I had. Doctors told me to ignore it which I did but now I am curious with your posting.

Nancy Shermoen~

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@bertbiz

I was diagnosed with MP May of this year. I understand you pain and fatigue. You are not complaining, you are stating how you feel. What kind of treatment have you gotten?

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@snoopdog, @upnorthnancy There is a lot of information about Linear Metallic Density on Google. One of the simple explanations had to do with accupuncture. It’s worth the read.

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Hello all,

I’m still dealing with this annoying condition. My GP has put me on a ‘burst’ treatment of prednisone 40mg/day for 7 days. I’m on day 6 and don’t feel any different. Still minor pain (probably equivalent to a toothache), in the lower left quadrant/pelvis. When I spoke to the GI doc, he indicated to me that if I could manage the pain, to stay off of prednisone because of the side effects. The only reason I decided to try the drug was because I’m travelling overseas to Thailand for a month (December) and thought I should bring a prescription with me..but my doc suggested I take it now. I’m pretty sure this is going to lead to a longer dose — which I’m apprehensive about taking. I think I may just go back to pain management. The frustrating part is the lack of knowledge from the medical community. There doesn’t seem to be any “plan” to combat this situation.

Regarding the food and diet suggestions listed here in this forum. Is there any research supporting this? Can someone post a link? I monitor my food pretty closely for general diet/health purposes, I don’t see any direct connection to what I’ve eaten and how I feel.

Oh..does anyone feel better when standing/lying down? I find the pain worsens when I’m sitting…just curious if anyone else experiences this.

Thanks,
Mike

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@miker46

Hello all,

I’m still dealing with this annoying condition. My GP has put me on a ‘burst’ treatment of prednisone 40mg/day for 7 days. I’m on day 6 and don’t feel any different. Still minor pain (probably equivalent to a toothache), in the lower left quadrant/pelvis. When I spoke to the GI doc, he indicated to me that if I could manage the pain, to stay off of prednisone because of the side effects. The only reason I decided to try the drug was because I’m travelling overseas to Thailand for a month (December) and thought I should bring a prescription with me..but my doc suggested I take it now. I’m pretty sure this is going to lead to a longer dose — which I’m apprehensive about taking. I think I may just go back to pain management. The frustrating part is the lack of knowledge from the medical community. There doesn’t seem to be any “plan” to combat this situation.

Regarding the food and diet suggestions listed here in this forum. Is there any research supporting this? Can someone post a link? I monitor my food pretty closely for general diet/health purposes, I don’t see any direct connection to what I’ve eaten and how I feel.

Oh..does anyone feel better when standing/lying down? I find the pain worsens when I’m sitting…just curious if anyone else experiences this.

Thanks,
Mike

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Hi Mike,
I’m so sorry you are still dealing with this. I’m not sure if it’s MP or SM that you’re dealing with, but I can tell you my experience with my MP. It definitely felt better when I kept moving. I work out every morning, but when the MP was flaring, I couldn’t run, it was too jarring. So I walk instead. Sitting and laying down I felt more pain. I was on Prednisone for about 2 1/2 months. I started with the 40 mg for a couple of weeks and then was slowly weaned off 3-5 milligrams at a time. The Prednisone did help me a lot. My lymph nodes in the mesentery definitely shrunk. I put back on weight because I was eating again. The FODMAP diet was very helpful for me. I tried one vegetable at a time and waited a couple of days to see how that affected me. I found out no corn anything! No onions, cooked or otherwise. But I can eat scallions and shallots (cooked), but not a ton of them. I used onion powder to replace the flavor in cooking. I use a lot of spices and herbs. At least some of those are green. I have really good GI doctors/nurse practitioners in Mpls. Although MP is rare, they seem to know what they’re talking about. The only side effect I’ve had from the Prednisone now that I am off it and have been since August, is I’m experiencing some hairloss. It is not uncommon, but is disconcerting, for sure. I was told that my hair would grow back in a couple of months. So until then, if that’s the worst of what is happening, so be it. I am feeling much better these days.

I hope this has helped.

Roberta

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Hello Mike,

Welcome to Mayo Connect. Hopefully others with your diagnosis can share more specific diet information.

I also have a few different autoimmune diseases that I believe diet/nutrition makes a difference. I have PMR (in second occurance now) and SFPN. The PMR was diagnosed back in 2007 and treated with 20mg prednisone and took several years to get off the drug. I’m currently titrating off prednisone and hope to be off in a few more weeks. The SFPN has been going on for 15+ years but only diagnosed this past March. I only have the numbness in both legs which started years ago in the toes and gradually worked it’s way up to below the knees. I didn’t start researching treatment until I finally met with a neurologist at Mayo and he gave me the diagnosis. Knowing there was no drug that helps with numbness I started looking at alternative treatments and therapy which made me pretty skeptical due to the amount of scams out there selling hope to people in pain. One of the best feel good stories I have read which got me to look at nutrition was the book by Dr. Terry Wahls – The Wahls Protocol. http://terrywahls.com/about/about-terry-wahls/.

It’s a great thing that you are being proactive and doing your own research. Good luck on your journey!

John

Liked by bertbiz

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Hi everyone. I was googling Mesenteric Panniculitis because of some trouble I’m having getting scheduled for an appointment with a hospital that may be able to help me. I’ve been dealing with MP since early 2009. Up until now, I have felt SO alone! Nobody seems to know about it, they don’t know anyone who has it, nothing. I’ve even had a couple of doctors look at me puzzled, when I say I have it. I’ve had surgery once for it (biopsy to diagnose it definitively) & had 2 other hospital stays for “flare ups” that were so bad that I thought I was dying. I have spent the last 7 years looking for answers. Reading through these posts, I just want to cry. I’m reading story after story that are just like mine. I can’t tell you all what that means to me. I’m sorry for anyone who suffers with this, but to not feel so completely alone with this is amazing!! Right now, most of the doctors I have seen about this, seem to think the MP is one of several symptoms pointing to an autoimmune disease; they just don’t know which one. So my GI doctor is trying to refer me to the specialists at Emory in ATL. The scheduler there is telling me 2 things… first, that my MP needs to be treated by a DERMATOLOGIST!! (Never in the 7 years of dealing with this have I heard that one). And 2, when I explain that I’m not necessarily looking to treat the MP (my GI doc, does that), but instead looking for the autoimmune disease that my be causing this & other issues I have, they tell me that they won’t see me UNTIL I’ve been diagnosed!! My response to that one was “I thought that’s why we go to the doctor in the first place!” The irony was lost on her. I just want some answers! I live in constant fear of the next flare up! It has interfered with so many events in my life. I spent my 10th wedding anniversary curled up in a ball with my husband cleaning up after me & caring for me. I spent my mother’s funeral in a hospital bed, in the same hospital that she had passed away in, just days before. I couldn’t be there for her service. I just need some answers & I’ve been trying to find them for the better part of the last 7 years. Is there any reason why I can’t get scheduled to be seen by the rheumatologists at Emory (like, real reasons, not a scheduler that I can’t get passed!). I don’t know where to turn next. I just live my life the best I can, I deal with the daily pain & I wait for the next major flare up!

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Hi Lynn, I am so sorry you are having so much trouble finding a doctor. But that is why they call it the “practice” of medicine. The problem with MP and other diseases like it, is you have to turn into the best advocate for yourself. You have to INSIST on being seen. That’s what I had to do. I called on a Thursday and talked to the nurse practitioner and said “This is how it’s going to go…I’m going to be seen by a doctor tomorrow morning, have a CT Scan and have answers by the end of the day.” That’s exactly what happened. That’s when I got my diagnosis of MP. It is so rare, the radiologist that read my scan had never seen a case, just read about it. By the following week I was in the GI doctor’s office and was on prednisone by the end of that week. I can’t stress enough about becoming your own best advocate! Do your research, find out what the options are. If you don’t like the current doctor, find a different one. I sound a little soap-boxy, sorry. I also started on the FODMAP diet. I talk about that all the time. It was so helpful for me. I was able to eat and put back on the weight I had lost. I felt stronger and healthier. It’s a long road, as you know too well. I don’t get the whole “dermatologist’ thing. Stay strong. We are all here for you. It’s a great resource.

Roberta

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@bertbiz

Hi Lynn, I am so sorry you are having so much trouble finding a doctor. But that is why they call it the “practice” of medicine. The problem with MP and other diseases like it, is you have to turn into the best advocate for yourself. You have to INSIST on being seen. That’s what I had to do. I called on a Thursday and talked to the nurse practitioner and said “This is how it’s going to go…I’m going to be seen by a doctor tomorrow morning, have a CT Scan and have answers by the end of the day.” That’s exactly what happened. That’s when I got my diagnosis of MP. It is so rare, the radiologist that read my scan had never seen a case, just read about it. By the following week I was in the GI doctor’s office and was on prednisone by the end of that week. I can’t stress enough about becoming your own best advocate! Do your research, find out what the options are. If you don’t like the current doctor, find a different one. I sound a little soap-boxy, sorry. I also started on the FODMAP diet. I talk about that all the time. It was so helpful for me. I was able to eat and put back on the weight I had lost. I felt stronger and healthier. It’s a long road, as you know too well. I don’t get the whole “dermatologist’ thing. Stay strong. We are all here for you. It’s a great resource.

Roberta

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Thanks Roberta. I agree 100% about being my best advocate. I’ve already had to, so many times over the last 7 years. I was originally diagnosed in NC, & at the point that my family practitioner (best Dr EVER, I miss him very much) referred me to Duke Univ. my job transferred me to GA. I literally had to start the whole process over. For the past few years I’ve taken the “just treat the symptoms & deal with the flare-ups” approach. I’m ready to get back to searching for answers though & so is my GI. Which is why this is so frustrating! I’m getting ready to take another swing at them now. As I mentioned, I was just doing some more fact finding, when I found this site. It’s AMAZING to have the support of people who “know”!! I’ve been reading previous posts. This place has restored some of my sanity!! I’m so glad I came across this!! Thanks again!!

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@miker46

Hello all,

I’m still dealing with this annoying condition. My GP has put me on a ‘burst’ treatment of prednisone 40mg/day for 7 days. I’m on day 6 and don’t feel any different. Still minor pain (probably equivalent to a toothache), in the lower left quadrant/pelvis. When I spoke to the GI doc, he indicated to me that if I could manage the pain, to stay off of prednisone because of the side effects. The only reason I decided to try the drug was because I’m travelling overseas to Thailand for a month (December) and thought I should bring a prescription with me..but my doc suggested I take it now. I’m pretty sure this is going to lead to a longer dose — which I’m apprehensive about taking. I think I may just go back to pain management. The frustrating part is the lack of knowledge from the medical community. There doesn’t seem to be any “plan” to combat this situation.

Regarding the food and diet suggestions listed here in this forum. Is there any research supporting this? Can someone post a link? I monitor my food pretty closely for general diet/health purposes, I don’t see any direct connection to what I’ve eaten and how I feel.

Oh..does anyone feel better when standing/lying down? I find the pain worsens when I’m sitting…just curious if anyone else experiences this.

Thanks,
Mike

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Hi Roberta,

Thanks for the response. Yes, I’m dealing with MP.

I agree, moving/exercise keeps the pain in check. The more I move, the more I forget about it…and like I said, when I’m sitting it’s the worse (and sadly I have an office job — think I may invest in a standing desk for work).

Regarding the FODMAP stuff – where did you first hear about this? Why did you decide to start a diet for an unrelated condition (is it not for IBS sufferers?)

Thanks again,
Mike

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I’m so glad you found us and I’m so glad you’re here. It was really helpful for me, as well. Good luck and keep us posted.

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@miker46

Hello all,

I’m still dealing with this annoying condition. My GP has put me on a ‘burst’ treatment of prednisone 40mg/day for 7 days. I’m on day 6 and don’t feel any different. Still minor pain (probably equivalent to a toothache), in the lower left quadrant/pelvis. When I spoke to the GI doc, he indicated to me that if I could manage the pain, to stay off of prednisone because of the side effects. The only reason I decided to try the drug was because I’m travelling overseas to Thailand for a month (December) and thought I should bring a prescription with me..but my doc suggested I take it now. I’m pretty sure this is going to lead to a longer dose — which I’m apprehensive about taking. I think I may just go back to pain management. The frustrating part is the lack of knowledge from the medical community. There doesn’t seem to be any “plan” to combat this situation.

Regarding the food and diet suggestions listed here in this forum. Is there any research supporting this? Can someone post a link? I monitor my food pretty closely for general diet/health purposes, I don’t see any direct connection to what I’ve eaten and how I feel.

Oh..does anyone feel better when standing/lying down? I find the pain worsens when I’m sitting…just curious if anyone else experiences this.

Thanks,
Mike

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My GI doctor & the nurse practitioner gave me the FODMAP diet guidelines. I was told it was for IBS sufferers as well as any inflammatory intestinal condition. It really has helped me a lot. I have an office job as well. I try to get up and stretch once an hour or so.

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@miker46

Hello all,

I’m still dealing with this annoying condition. My GP has put me on a ‘burst’ treatment of prednisone 40mg/day for 7 days. I’m on day 6 and don’t feel any different. Still minor pain (probably equivalent to a toothache), in the lower left quadrant/pelvis. When I spoke to the GI doc, he indicated to me that if I could manage the pain, to stay off of prednisone because of the side effects. The only reason I decided to try the drug was because I’m travelling overseas to Thailand for a month (December) and thought I should bring a prescription with me..but my doc suggested I take it now. I’m pretty sure this is going to lead to a longer dose — which I’m apprehensive about taking. I think I may just go back to pain management. The frustrating part is the lack of knowledge from the medical community. There doesn’t seem to be any “plan” to combat this situation.

Regarding the food and diet suggestions listed here in this forum. Is there any research supporting this? Can someone post a link? I monitor my food pretty closely for general diet/health purposes, I don’t see any direct connection to what I’ve eaten and how I feel.

Oh..does anyone feel better when standing/lying down? I find the pain worsens when I’m sitting…just curious if anyone else experiences this.

Thanks,
Mike

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Hi there,I have had MP for over 5 years and
have been able to address the symptoms with diet.  I have never taken steroids even when I am was in terrible pain.  I have seen Dr.
Ehrenpreis in Chicago, who specializes in MP, and he is an amazing
doctor and basically said that if you can control it with diet then
don't take medicine.  All my research on the autoimmune side of MP (I
have been told that not all cases are autoimmune related) is that
everything is caused by a leaky gut.  This is why FODMAP works for so
many people.  I, on the other hand, used the Paleo Autoimmune protocol. 
It completely held things in check for me, and I would go on and off the
diet when symptoms arose.  Unfortunately, I cheated all summer which
led to some other issues, and the diet wasn't helping me as much.As
such I did more research and found other resources (in the field of
functional medicine) that have helped me control my symptoms again. 
Each person is different and their body's react to foods differently,
and as such if FODMAP doesn't work for you, read the articles of the
Paleo Mom.  She seems to look at things more scientifically, and
understands that some folks need to be on FODMAP and some just need to
be on an autoimmune diet. The great thing about the Paleo autoimmune
protocol is that you can add food back and you just figure out what your
body reacts to.  In addition to the Paleo Mom I recommend
listening and reading articles by Dr. Mark Hyman (who heads the
functional medicine department at the Cleveland Clinic) and Dr. Chris
Kresser.  In addition to dieting, I actually started taking the supplements recommended by Dr.
Chris Kresser (http://my.chriskresser.com/the-supplement-guide/) , and not only have my symptoms gone away, but for the first time in 11 years I no longer need to take Zantac 2 to 3 timies a day.In January, I plan on visiting with a Functional Medicine doctor and getting food testing.  Please listen to Dr. Kresser in that not all food testing labs are equal.   Unfortunately, it isn't covered by insurance and is expensive, but my positive results so far are giving me confidence that it is worth the expense.  I hope this helps at least one person, since it helped me.take care,Doron

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