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.

S Jackson | @mommasaid | Apr 13, 2015
In reply to @shareie "I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er..." + (show)
@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

Jump to this post

Would love to be in the group but I don't do facebook or other social<br />
media's. Thanks.<br />
<br />

REPLY
Von, Alumni Mentor | @vdouglas | Apr 13, 2015
In reply to @shareie "I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er..." + (show)
@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

Jump to this post

Hi This is Von in Las Vegas. I would love to join your support group. Not sure about the navigation, but I will give it a try.<br />
Von <br />

REPLY
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Apr 14, 2015
In reply to @shareie "I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er..." + (show)
@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

Jump to this post

I private messaged you 🙂

REPLY
Doron | @doron | Apr 25, 2015

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

REPLY
13 replies
EddieG | @eddieg | Apr 26, 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 have been going thru the MP type issues, had pain in upper left quadrant (dull deep pain) and feeling sick, bowel issues not feeling well. Had a CT scan done, GI doctor called me same day and said report showed inflamation/infiltration at Root of mesentery, misty sign and lymph node enlargement in area. I was referred to oncologist. I read the CT report and said a diagnosis of MP and differential diagnosis of early lymphoma. After the million dollar work up that included a PET scan because they were sure I had lymphoma it came back not showing anything, along with negative tumor blood work, though my C-Reactive protein was very high. I had upper GI scope, colonoscopy that nothing came up serious, diverticulosis and some polyps removed. I have a follow up CT scan in a month and guess I will have to live with this abdominal pain because they have no clue about this MP the radiologist seen . Frustrated and want to get treatment.

REPLY
tlw32 | @tlw32 | Apr 27, 2015

MP was an incidental find on CT scan while looking for kidney stone. Looking for any feedback. No drs in my area are experienced with this dx.

REPLY
2 replies
tlw32 | @tlw32 | 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

Thanks for sharing. I too just recently started Paleo. I hope it helps.

REPLY
EddieG | @eddieg | Apr 27, 2015
In reply to @tlw32 "MP was an incidental find on CT scan while looking for kidney stone. Looking for any..." + (show)
@tlw32

MP was an incidental find on CT scan while looking for kidney stone. Looking for any feedback. No drs in my area are experienced with this dx.

Jump to this post

Also interested in finding doctors in the NY Tri state area that specialize in this if they confirm this is what I have. My hospital seems to be clueless on it, other then the radiologist .

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

If you are going to do the Paleo, make sure you start out with the auto<br />
immune protocol. Like I said, I am no doctor but that is what helped me.<br />
take care,<br />
<br />
-- <br />
Doron Friedman<br />

REPLY
tlw32 | @tlw32 | Apr 27, 2015
In reply to @tlw32 "MP was an incidental find on CT scan while looking for kidney stone. Looking for any..." + (show)
@tlw32

MP was an incidental find on CT scan while looking for kidney stone. Looking for any feedback. No drs in my area are experienced with this dx.

Jump to this post

Eddie, please keep me updated. I am in very similar situation. I do not have confirmed diagnosis yet. I went to Rhematologist and GI .... had scopes...nothing significant presented. I am in Upstate Ny.

REPLY
View MoreView Less
Please sign in or register to post a reply.