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

@michelet

Hi,
My name is Michele Thomas.
Was diagnosed with mesenteric panniculits by the Trauma Center radiologist in Columbia, SC where we had a car accident in May of 2019.
Have a massive hematoma from the seat belt tightening or embedding in my abdomen from one side to the other. The panniculitis is located on
the left side where the seat belt fastened into the center of the front seat–the air bags did not go off–so I took all of the force of the crash where
the seat belt was fastened across me. I was very fortunate to have gone to Mayo Clinic in Rochester for an endothelial cornea transplant which saved
the sight in my left eye in 2015. So I went on the Mayo site and found Dr. Pardi et al's research article from 2007 on mesenteric panniculitis. Called the GI Department and the doctors asked me to sent the records from the Trauma Center which I did and they called the next day to schedule an appointmemt for August. Dr. Glen Alexander and Dr. Zheng, his resident, saw me and ordered another CT Scan which I did. In evaluating the CT scans, the
mesenteric panniculitis had not changed in any way. Since I'm allergic to steroids, they concurred that since I was asymptomatic it was okay to take nothing.
Have never had outright pain with it, but rubbing it gently you can tell its not quite right. They said that 16 to 25% of individuals with this diagnosis
go on to have non-Hodgkins Lymphoma, so if I end up with night sweats, fever, loss of weight or other "b" systems to head back ASAP. If not we
plan to reconnect in a year from my last visit to see if there are any changes. They were wonderful–I highly recommend them. Dr. Alexander showed me the
CT scan pointing to the different important things present in my abdomen–some diverticulitis, a good liver with one focal area of fat, a healthy spleen. Felt very comfortable with him and asked him a number of questions and pointed to things I did not understand on the screen. He very gently answered my questions slowly so I could take it in. I could tell that he was very experienced and he told me he had seen many of the cases in the original study done in 2007. So grateful to God that I was able to see him.
Before I went to Mayo, I saw a local dietician here and am on a FODMAP diet which includes gluten free and also careful of acidic foods for GERD. Subscribed to Diabetic Living Magazine and Simply Gluten Free and More–they both have great recipes. My local GI has run differential blood tests to watch my white cell count and hopes that I will go to a hemotologist/oncologist because he was taught that this disorder is not best covered by GI practitioners, but is rather a disease of the blood–he did his training and residency at UK and this is first year in practice. He is very encouraging and listens which has been very helpful as he had originally suggested the FODMAP diet when I saw him after the accident in May. This week he looked me in the eyes and said, "You have a rare disease–1 in one million people have it." So I decided to do a little research today to connect with others who have this disorder so I won't feel so alone and maybe I can help others by sharing and learn what others have done that has worked for them.

Jump to this post

Hi @michelet and welcome to Connect. Thank you for sharing your story! Your outlook on your diagnosis is inspiring. I'm sure fellow Connect members like @kimber361,@patowen1 @ashley112689, and @kimh would like to connect with you as you get to know the community.

Back to you @michelet, how has your diet been helping?

REPLY
@patowen1

Two years ago I had an abdominal blood clot and was diagnosed with Antiphospholipid Antibody Syndrome, a rare disease. I was also diagnosed with Essential Thrombocythemia, another rare low grade blood cancer. I was put on baby aspirin, Eliquis, and Hydroxyurea for the blood cancer. Two months ago I was diagnosed with Mesentery Panniculitis, another rare disease by CT Scan. My internist and onlologist consulted with the radiologist who diagnosed the MP and they all agreed that since the Mesentery had not changed in a year that I did not have MP. They also now say I do not have Anitphopholipid Antibody Syndrome which supposedly does not go away. I am starting to lose faith in the tests and doctors. Anybody else have similar experiences?

Jump to this post

Hi @patowen1,

I'm tagging other members who have talked about Antiphospholipid syndrome in other discussions; I hope they will be able to share their experiences and insights with you. Please meet @georgiagirlrelocated, @skymya, @soitis4590, @taogirl2, @colettehellerud, @lagata, @lisaa, @lena999 @zebraclaire97 @irenekw @bruges. You can also read their experiences and insights in these discussions:

– Antiphospholipid syndrome/Hughes https://connect.mayoclinic.org/discussion/antiphospholipid-syndrome-hughes/
– Antiphospholipid and Lyme disease https://connect.mayoclinic.org/discussion/antiphospholipid-and-lyme-disease/

According to this article by Mayo Clinic http://mayocl.in/1YaYc5X “People with certain infections, including syphilis, HIV infection, hepatitis C and Lyme disease, among others, have a higher incidence of having antiphospholipid antibodies.”

@patowen1, what symptoms of antiphospholipid syndrome do you have and how are you managing them?

REPLY
@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

Jump to this post

Hi Lisa my name is Angelia Sanders from Marysville MI. I was diagnosed with messentric panniculitis March of 2017 and an still suffering from flair ups. Please add me to your Facebook group.
Thanks

REPLY
Please login or register to post a reply.