1. < Digestive Health

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.

royal | @royal | Mar 26, 2016

I was diagnosed with MESENTERIC panniculitis from 2 ct scans this past year 2015. I have had multiple digestive problems(extreme pain, nausea, etc) and lost 32 lbs. I have heart palpatations have vitamin absorption problems, extremely low in B12 and D, and worst of all now have extreme anxiety and panic due somewhat I believe because of the change in my gut makeup (serotonin, etc changes) and absorption problems.
My gastrointestinal doctor was of no help and passed me off to another of no help who sent me to a surgeon who did not want to do a biopsy because he wasn't comfortable doing it and feared doing more damage (to his credit).

I live in Pensacola, Florida and feel like I may as well live on the moon because no one here knows anything about this disease.
Mayo Jax is 5+ hours away(don't know if they have a mesenteric gastrointestinal doctor) and now with the anxiety and panic travel is extremely hard.
Anyone in this area have any doctor references?

REPLY
2 replies
Kelsey Mohring | @kelseydm | Mar 27, 2016
In reply to @royal "I was diagnosed with MESENTERIC panniculitis from 2 ct scans this past year 2015. I have..." + (show)
@royal

I was diagnosed with MESENTERIC panniculitis from 2 ct scans this past year 2015. I have had multiple digestive problems(extreme pain, nausea, etc) and lost 32 lbs. I have heart palpatations have vitamin absorption problems, extremely low in B12 and D, and worst of all now have extreme anxiety and panic due somewhat I believe because of the change in my gut makeup (serotonin, etc changes) and absorption problems.
My gastrointestinal doctor was of no help and passed me off to another of no help who sent me to a surgeon who did not want to do a biopsy because he wasn't comfortable doing it and feared doing more damage (to his credit).

I live in Pensacola, Florida and feel like I may as well live on the moon because no one here knows anything about this disease.
Mayo Jax is 5+ hours away(don't know if they have a mesenteric gastrointestinal doctor) and now with the anxiety and panic travel is extremely hard.
Anyone in this area have any doctor references?

Jump to this post

Hi @royal! Welcome to Connect. I'm sorry to hear about the difficulties in your journey to find answers. Hopefully this forum will provide some support! Just an FYI, if you were interested in trying to get an appointment at our Jacksonville location, you could call 904-953-0853 to see if we have any doctors that could help you find some answers!

REPLY
msvivian | @msvivian | Mar 27, 2016
In reply to @royal "I was diagnosed with MESENTERIC panniculitis from 2 ct scans this past year 2015. I have..." + (show)
@royal

I was diagnosed with MESENTERIC panniculitis from 2 ct scans this past year 2015. I have had multiple digestive problems(extreme pain, nausea, etc) and lost 32 lbs. I have heart palpatations have vitamin absorption problems, extremely low in B12 and D, and worst of all now have extreme anxiety and panic due somewhat I believe because of the change in my gut makeup (serotonin, etc changes) and absorption problems.
My gastrointestinal doctor was of no help and passed me off to another of no help who sent me to a surgeon who did not want to do a biopsy because he wasn't comfortable doing it and feared doing more damage (to his credit).

I live in Pensacola, Florida and feel like I may as well live on the moon because no one here knows anything about this disease.
Mayo Jax is 5+ hours away(don't know if they have a mesenteric gastrointestinal doctor) and now with the anxiety and panic travel is extremely hard.
Anyone in this area have any doctor references?

Jump to this post

To "royal" in Pensacola, Florida: I am sorry you have this disease. I am
from Michigan and I have it too and I have many of the
same symptoms as you. You may find it quite helpful to join a very
supportive and helpful private Facebook support group called "Sclerosing
Mesenteritis."

In order to join you can private message Lisa Schwart from Tulsa, Oklahoma. You can private message her and she can add you into the group.
You can also send in a friend request to Lisa Schwart (the photo is of two
women, herself and her daughter) and then you can message her to join the
Sclerosing Mesenteritis Facebook page. I hope that you can find successful
treatment for this disease.

Sincerely,

Vivian

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S Jackson | @mommasaid | Apr 17, 2016
In reply to @doron "Although I am a private person, my goal in this post is to tell everyone that..." + (show)
@doron

Although I am a private person, my goal in this post is to tell everyone that I have controlled my symptoms for 2.5 years without any drugs. On a CT scan 5 years ago the radiologist saw inflammation of lymph nodes and wasn't sure what it was but suspected mesenteric panniculitis. I was not symptomatic. In August of 2012, I came down with severe pain and bloating, and for two months I could not sleep on my side, couldn't run, barely walked, etc... all with severe pain. I started reading online, and all I saw were these terrible stories and the dangerous drugs people had to take. I had a clue that my disease was autoimmune related, because I had an autoimmune disease that caused fluid to gather in my inner ear.

Let first state, I am a totally Western medicine kind of person, and have nothing to gain from sharing my experience. The only thing I hope is that one person can gain freedom from pain like I have.

My research led me to the Paleo, auto immune protocol diet. It is a tough diet, and I lost a lot weight at first (too much). The good news is the diet lets you add things so that you can figure what your triggers are. I was very strict for the first 4 to 6 weeks. I now cheat all the time, but go back on a less strenuous version of it when I begin to feel minor symptoms. The great news is that my blood tests are amazing (I had high triglycerides, low good cholesterol, etc.) I am no expert, not a doctor, but just someone who has felt guilty by not sharing what has helped me.

I wish you all no pain, and a full recovery. take care, Doron

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I am so sorry for everyone's problems I am told mine is mild I will be getting more test in October What kind of auto immune disease do you have that causes fluid on your ear? Thanks

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jlap84058 | @jlap84058 | Apr 18, 2016

Hi I am new to the SM world. I have been diagnosed with it for 2 months now and it has been terrible... As you all know. Diet and exercise have not helped. Less stress seems to have helped... I took my family to the beach and completely unplugged from work for several days and I had several good days in a row. Does stress contribute to this disease? Has anyone had to take time off from work for this? I just need to know how to make myself stop hurting without taking any pain meds.

Prednisone for 2 months has not helped. I'm 40 mg a day. Please any insight would be amazing! Thank you!

REPLY
1 reply
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Apr 18, 2016
In reply to @jlap84058 "Hi I am new to the SM world. I have been diagnosed with it for 2..." + (show)
@jlap84058

Hi I am new to the SM world. I have been diagnosed with it for 2 months now and it has been terrible... As you all know. Diet and exercise have not helped. Less stress seems to have helped... I took my family to the beach and completely unplugged from work for several days and I had several good days in a row. Does stress contribute to this disease? Has anyone had to take time off from work for this? I just need to know how to make myself stop hurting without taking any pain meds.

Prednisone for 2 months has not helped. I'm 40 mg a day. Please any insight would be amazing! Thank you!

Jump to this post

Hi jlap84058 h my name is Lisa and we have a private group for members with SM/MP in it. It's a nin searchable group as its private and nothing shows in newsfeed/walls, etc :)<br />
My name is Lisa schwart in Tulsa, Oklahoma and you can find me on Facebook.  :)Please send me a friend request with some of your info re diagnosis, city, state or country (we have many many members internationally and manybin the US and can place you in touch with some great support and hopefully others near you for networking with docs, etc):) <br />
Hope to hear from you soon!  We have approx 245 members now internationally and addi g people in constantly as they're diagnosed etc <br />
Lisa <br />
PS) I have a daughter who was 14 when diagnosed and now age 22.  We live in Oklahoma and in Ohio now due to the Sm and the amount of surgeries, lack of response to meds etc. She just had her 18th abd surgery almost a month ago bidibf time for bowel transplant <br />
Mom aka Lisa :)<br />
<br />
Sent from Yahoo Mail on Android <br />
<br />

REPLY
G.Meg | @gmeg | Apr 18, 2016

I have been diagnosed with two types of panniculitis. I just found out about this site and saw your post. I will return to the site when I have collected my thoughts on what I want to share with you. Meanwhile I will leave two bits of information; I live in upstate New York and traveled to the Mayo Clinic 3 years ago to confirm a diagnosis of schlerosing mesenteritis. Since with my own research as a RN ( could not find an MD who even knows about panniculitis) I self diagnosed a systemic panniculitis called idiopathic nodular panniculitis. (There are 7 types of panniculitis.) Second bit of information: contact NIH and go to Genetic and Rare Diseases Information Center (GARD) They sent me a large packet of information. When you have read it contact me and we can discuss. gmeg

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BILLinDC | @billindc | Apr 28, 2016

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

REPLY
14 replies
Angela M | @tardis6167 | Apr 28, 2016
In reply to @billindc "Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore..." + (show)
@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

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<br />
<br />
<br />
There is a good Facebook group with over 250 members. Look under Sclerosing Mesenteritis. Lots of info there.<br />
<br />
<br />

REPLY
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Apr 28, 2016
In reply to @billindc "Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore..." + (show)
@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

Jump to this post

Bill my name is Lisa schwart in Tulsa, Oklahoma if you send me a friend request I can add you over to a group with approx 250 members now all across the US and internationally. It's a private group and not searchable due to being a medical group! :)we have members ranging in age 2 thru 80 in there. My daughter was diagnosed at age 14<br />
Lisa 🙂  <br />
<br />
Sent from Yahoo Mail on Android <br />
<br />

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