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Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect
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
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Great news @bertbiz. Speaking of prednisone, you may be interested in the discussion that @johnbishop and @charlena are having about tapering off the drug and managing pain. https://connect.mayoclinic.org/discussion/i-was-diagnosed-with-pmr-2-12-years-ago-steroids-didnt-help/ John explains his journey in detail in terms of time and dosage.
Does anyone in Los Angeles know of a doctor that specializes in this? My husband, 49, had a CT scan and MP was found. It was indicated as 8 cm in size. Also diverticulitis was found. No other tumors or problems. He is in zero pain, just some occasional bloating based on what he eats. We haven't seen his general practioner yet about the results but I want to plan ahead. Also, does anyone think the area should be biopsied or can this cause more problems?
I recently found I have the same exact diagnosis. No pain and bloating which was horrible and uncomfortable. My doctor gave me prednisone and it actually made me feel worse and had all kinds of side effects. I met someone who also has the same diagnosis and she went on a Whole Food Plant Based Diet and looks great. I have been on this diet for three weeks and have no more bloating or pain. If you look up "Forks Over Knives" you can read up on it. This worked for me and I am just offering a suggestion that may be easy to get relief. I love my doctor but went to a few others and they really don't know much about MP.
Best of luck to your husband~
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3 ReactionsWelcome to Connect @retrebotic.
I see you've already met @mjg1160. Allow me to also introduce you to @bertbiz @billindc @mardellepoff @billymac65 and the others sharing here. Someone from @lisas444's group may be able to recommend a Mesenteric Panniculitis specialist in Los Angeles. @billindc was able to find a specialist in DC who coordinated his care with specialists here at Mayo Clinic.
You're wise to plan ahead and prepare questions for your appointment with your husband's GP. What questions have you thought of so far?
Thank you Mjg1160! I think diet will make a difference, thank you for the recommendation. Already I have him eating all organic. He does have a reaction to some bread products (he breaks out in hives) and milk products. I read the right diet can help with inflammation. Hopefully I can get him to agree.
Colleen, once we get the blood work back we will know more. I want my husband tested for allergies. Then I plan on asking his primary doctor if he has any experience with this?I will ask if this can be an infection in the area ( I read that is sometimes the case)? I plan on asking if a biopsy is recommended (I would feel better if it was biopsied)? I plan on asking if he has a colleague who is a rheumatologist that has knowledge or specializes in this? I plan on asking the rheumatologist if there is a holistic approach to this, before taking steroids since he is experiencing no pain? Will tumeric help rather then a steroid? Also is this a progressive disease that leads to major problems later, or is it a disease that is in and out of remission?
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1 ReactionI did find two doctors in Los Angeles who list having experience but I'm concerned that they don't really, I of course will call. Also I have a rheumologist I really like ( I test high for RA, but no rheumatoid so I check in with him once a year) I will see if he has knowledge of this.
Great questions RT! I bet some of the MP people here can share their experiences with some of things you're asking about, like biopsies, steriods, disease progression and rheumatologists.
Hi i was diagnosed 6 months ago , Gotten nowhere after seeing multiple doctors, who don't know what to do. any recommendation for a doc in Houston tx ?
Welcome @txbear. Your story of dealing with doctors who are not familiar with MP sounds similar to many others sharing in this discussion. I hope someone here has knowledge of a specialist in Houston.
Should you wish a second opinion, please contact Mayo Clinic here: http://mayocl.in/1mtmR63
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1 ReactionHello, I've been recently diagnosed with MP a few months ago. A CT scan uncovered the issue while looking for diverticulitis (which was negative). The CT guys thought I should do a colonoscopy to get a full image of the area. Which I did, and all is good. The GI doc says that if I can manage the MP pain that not treating it is fine. He also added that I should wait to see if I encounter severe pain before considering Prednisone because of the side effects.
I'm just wondering - how severe is the pain this community is experiencing? For me, it's more "uncomfortable" than "crippling". I mean, it never has stopped me from going to work, or woken me up from sleeping. It's more annoying than anything...but I'm curious if anyone else has the same kind of issue? Also, is there any over the counter drugs that might be effective (ibuprofen?).
I'm male, 46.
Thanks,
Mike