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.

We are all in the same boat, and there is definitely some solace to be found in knowing you are not alone! I hope the diagnosis helped explain a lot of the "mystery" symptoms that must have puzzled both you and your doctor(s)! Having dealt with MP for 17 long years, do you have any recommendations as to what diets or treatments have worked for you? Nice to have everyone's support on here...it really prevents despair from rearing its ugly head!

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@shareie

I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er t hen continue prednisone 5 days...I'm auto immune , still trying to figure out what involves and no one Dr wise can answer any questions...my intestines swell and I hurt base d during attacks which last until I get prednisone etc.....I am tired of routine uncontrollable routine I have every two months....what's your advice and is this similarity to anyone? Have Been told my condition is very rare

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Hi pc, I'll send you a email on here. For some reason though, I don't have a link to get my emails responses last couple weeks. I'll send you the j fo to reach me though in the private email. We have 356 members
Lisa

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@shareie

I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er t hen continue prednisone 5 days...I'm auto immune , still trying to figure out what involves and no one Dr wise can answer any questions...my intestines swell and I hurt base d during attacks which last until I get prednisone etc.....I am tired of routine uncontrollable routine I have every two months....what's your advice and is this similarity to anyone? Have Been told my condition is very rare

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Hi Lisa,
I sent you a private message in response to your query to me regarding this technical issue. Can you send me a message using this form https://connect.mayoclinic.org/contact-a-community-moderator/. We'll get the issue sorted out for you. 🙂

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@shareie

I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er t hen continue prednisone 5 days...I'm auto immune , still trying to figure out what involves and no one Dr wise can answer any questions...my intestines swell and I hurt base d during attacks which last until I get prednisone etc.....I am tired of routine uncontrollable routine I have every two months....what's your advice and is this similarity to anyone? Have Been told my condition is very rare

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Hi @pcfromfm, there are several members who participate in both Lisa's Facebook group and here on Connect. I'd like to introduce you to several other Connect members who live with MP. Please meet @vdouglas @warlick @viva @bakb @missisays7 @doron @billymac65 @croller68 to name a few.

Your having lived with MP for over 17 years, I'm confident that you have a lot to offer. For example @billindc asks "do you have any recommendations as to what diets or treatments have worked for you?"

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I was diagnosed with MP last Thursday after a CT scan. Currently waiting on an appointment with the surgeon to confirm whether or not I actual have MP.

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@rips72

I was diagnosed with MP last Thursday after a CT scan. Currently waiting on an appointment with the surgeon to confirm whether or not I actual have MP.

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Hope your experience with surgeon and diagnosis goes well. I have been identified with the condition several times in last 3.5 years on CT. I have read in recent reports that biopsy is not always necessary for diagnosis. I'm getting biopsy soon. There is a MP group on fb if your not in it already and would like to join a lady will be inviting you most likely.:)

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@rips72

I was diagnosed with MP last Thursday after a CT scan. Currently waiting on an appointment with the surgeon to confirm whether or not I actual have MP.

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I don't use fb, my wife however is on it mainly to keep up with the kids and grand kids. I'm still waiting on the appointment with a surgeon, but have already started on the diet recommended for MP and it seems to be helping. Also, I tried making an appointment at the Mayo Clinic in Scottsdale since there is a Dr at the Mayo Clinic in MN who has done extensive research on MP, and I thought they could tap into his information, but they would not give me an appointment because I have government medical insurance (Medicare and Tricare).

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What type of diet did they suggest for you? No one I've seen can help me with diet.

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@susierq111

What type of diet did they suggest for you? No one I've seen can help me with diet.

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No one actually suggested the diet, I just researched it myself and discussed it with my daughter who is a Registered Nurse. The diet is basically the one for IBS, and is called FODMAP. I found the diet at IBSDiets.org. It is very similar to an Atkins diet. As an example, I had fried eggs and ham for breakfast, with no potatoes or bread. I didn't eat lunch (which is not recommended) and had a hamburger steak with tomatoes, and a small salad with Italian dressing for supper. So far I have been able to eat these meals with far less pain in my right side. However, I just started it 5 days ago, and will update everyone after being on for a few weeks. One big benefit is that I might even drop a few pounds!

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@susierq111

What type of diet did they suggest for you? No one I've seen can help me with diet.

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Hi @rips72,
I have been using the FODMAP diet for about a year. It really has made all the difference in the world for me. Suggestion: when you try to add a new food, a new veggie, take a Beano. My GI Doc suggested it would help break down foods. I haven't been able to eat Asparagus or onions yet without a big problem. The other thing I suggest is walking. If you walk once a day, it doesn't have to be fast or a long walk, it helps keep things moving, no pun intended.

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