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.

Kelsey Mohring | @kelseydm | Apr 27, 2015
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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Hi Eddie. So sorry to hear what you are going though. I know not having an answer must be really frustrating. Unfortunately, we can't make specific treatment recommendations through this correspondence, but if you'd like to seek help from Mayo Clinic or get a second opinion, please call one of our appointment offices (Arizona: 8480-301-8484 Florida: 904-953-0853 Minnesota: 507-538-3270). Hope you find some relief soon!

REPLY
1 reply
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Apr 27, 2015
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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it's great this is working for you! 🙂 SM/MP isn't just necessarily an auto-immune disease. it can be, but can also be attributed to other means.

REPLY
Doron | @doron | Apr 27, 2015
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

Jump to this post

I agree, and it is my understanding that there isn't much science as what<br />
the true causes are. For me, it just made sense given other signs I had,<br />
and the diet worked. It actually worked and continues to work each time I<br />
show any symptoms. On the CT scan, the enlarged lymph nodes are still<br />
there, but the symptoms just disappear when I am on the diet.<br />
<br />
I don't know if this diet will help a single other person, but if it does<br />
then I feel fortunate for sharing.<br />
<br />
-- <br />
Doron Friedman<br />

REPLY
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Apr 27, 2015
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

Jump to this post

There are a few that paleo diet has caused there symptoms to lessen. Unfortunately, there are all sorts of varying degrees of SM/MP. Some with more aggressive forms, diet isn't an option. We have 3 in our group that are fully TPN dependent and food isn't an option. My daughter is one who has been on feeds off/on since 2008 when she was diagnosed with it. The last 1.5 years fully dependent on TPN. One with feeding tube as well. Some have hard masses that grow out from the mesenteric wall, while others have some mild inflammation or node enlargement . . . . 🙂

REPLY
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Apr 27, 2015
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

Jump to this post

SM/MP masses can also affect bladder, ureter, kidney, etc. . . we have one in our group who has had his kidney removed, my daughter has right sided ureter damage, we have another with ureter/kidney also recently affected as well. We have some with ostomies up and above the SM sites causing obstructions -- we had one pass almost a year ago with SM only and passed just about a year from diagnosis. We've also just had another pass within the last month with SM as well as he decided enough was enough . . there are very mild forms of this that can be treated with diet and there are also several aggressive forms of SM/mp as well . . . . some respond to the drugs that are out there - some don't . . and others dealing with the abdominal pain that is out of control at times and constant - they quit . . . 🙁

REPLY
Doron | @doron | Apr 27, 2015
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

Jump to this post

It so sad to hear how much others are suffering. I feel blessed to have a<br />
minor version of this. Thanks for all your feedback.<br />
<br />
-- <br />
Doron Friedman<br />

REPLY
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Apr 27, 2015
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

Jump to this post

it is - it's great you're able to control it with minimal intervention! 🙂 There are a couple of others as well that have done the Paleo and have had great luck with it! 🙂 Good luck to you! 🙂

REPLY
S Jackson | @mommasaid | Apr 28, 2015
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

Jump to this post

Thanks to all of you for sharing. Mine is mild so I am trying to learn as<br />
much as I can. I do have abdominal pain at night but when I take lunesta I<br />
sleep through it. But I am going to have to stop it because even 1.5mg of<br />
the lunesta keeps me sleepy until mid afternoon. I will check out this<br />
diet. I need to loose weight and help my cholesterol etc.<br />

REPLY
Chris G. | @buckeyze | Jul 24, 2015

Hi everyone. I'm Chris. A 40 yo healthy (so I thought), asymptomatic, White male from Michigan. I had an abdominal CT scan a year ago (actually looking for something else) that mentioned possible MP (abnormal jejunal fat and enlarged lymph nodes)...and had another scan just a week ago that shows increased jejunal fat with no change in lymph nodes. I'm going to see a doctor at the University of Michigan hospital in 2 weeks. I'm really scared and sad right now, but glad I found this group.

REPLY
3 replies
Chris G. | @buckeyze | Jul 24, 2015
In reply to @buckeyze "Hi everyone. I'm Chris. A 40 yo healthy (so I thought), asymptomatic, White male from Michigan...." + (show)
@buckeyze

Hi everyone. I'm Chris. A 40 yo healthy (so I thought), asymptomatic, White male from Michigan. I had an abdominal CT scan a year ago (actually looking for something else) that mentioned possible MP (abnormal jejunal fat and enlarged lymph nodes)...and had another scan just a week ago that shows increased jejunal fat with no change in lymph nodes. I'm going to see a doctor at the University of Michigan hospital in 2 weeks. I'm really scared and sad right now, but glad I found this group.

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I'm really hoping there are reasons to be optimistic.

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