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

@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 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! 🙂

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

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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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@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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I am a 40 yr old woman, with no symptoms. I went in for roux Y gastric bypass surgery and the surgeon discovered the mass before performing the surgery. I have been diagnosed with M/P and since I have no symptoms (pain, discomfort) I have been given no treatment. I go back in 2 months for a follow up CT Scan. I’m wondering does this disease go away on its own? Is there anything I can do to help get rid of this mass? TIA

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@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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There is always a reason to be optimistic. If you are not in much pain that is a good start. I am wondering how many people have this and don't know it and it never progresses. If your pain and other symptoms are manageable, continue with a normal life until something changes.
Keep a folder with all of your medical test. Ask for copies of everything even CT's and MRI's, get a paper report and disc CD copy put it all in one file folder you can take with you if you have any issues.
Keep your chin up and remember, this body we have is pretty tough and it wants to survive at all cost. Live your life as normal as possible. Best wishes for normalcy

VonD

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Hi there my name is Mary. I think it’s interesting that people are talking about paleo because I have just been thinking about it since grains, beans, nuts and dairy all seem to irritate. (If I ate nothing but chicken and lettuce I would probably be fine.)

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@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 51. I was so scared when I was diagnosed with SM. And that was weeks ago, I only just found this group. My gastroent. doctor told me not to worry, not that big a deal, but that’s easy for him to say….Try to ease your mind a little. At least you have no symptoms and it is possible it will go into remission. Your doctor might recommend a colonoscopy just to be on the safe side. I have relatively mild symptoms and I’m hoping I don’t have to start medication. You are in the best possible position and it’s been found very early. Good luck.

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@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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That is freaky….I was just thinking yesterday about trying this.

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@lisas444

Bill: This is not necessarily an auto-immune disease. It can be attributed to it BUT it also can happen from abdominal trauma, peritonitis, sepsis, etc., multiple abdominal surgeries, etc. There are different stages with it. We have a great group with ages ranging from 17 months old to 70 years old and approx 85 in our group – with many being in their 20-40’s. My daughter was 14. Have they done a biopsy yet? Diagnosed with scans? CT? Biopsy? please feel free to PM me.

Lisa

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Just so people can see this when coming here – but as of 8/12/15 – we now have 124 in our support group all with SM and/or MP. Contact me for info if you’re interested and I can get your info and get you added in! We’re about to be listed with NORD shortly as well. Thx. Lisa (mom of kiddo with SM diag. age 14 and now age 22)

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@lisas444

Bill: This is not necessarily an auto-immune disease. It can be attributed to it BUT it also can happen from abdominal trauma, peritonitis, sepsis, etc., multiple abdominal surgeries, etc. There are different stages with it. We have a great group with ages ranging from 17 months old to 70 years old and approx 85 in our group – with many being in their 20-40’s. My daughter was 14. Have they done a biopsy yet? Diagnosed with scans? CT? Biopsy? please feel free to PM me.

Lisa

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Hey Lisa, you mean the group is? How soon do you think that will happen? My ssa hearing is on sept 18th and it couldn’t hurt to show the alj that!! Hope you and ms Mac are doing okay! Wish me luck on my hearing! I’m just on pain meds now, fentanyl 25 and hi singla 30.(straight time release hydrocodone.
Mark

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@lisas444

Bill: This is not necessarily an auto-immune disease. It can be attributed to it BUT it also can happen from abdominal trauma, peritonitis, sepsis, etc., multiple abdominal surgeries, etc. There are different stages with it. We have a great group with ages ranging from 17 months old to 70 years old and approx 85 in our group – with many being in their 20-40’s. My daughter was 14. Have they done a biopsy yet? Diagnosed with scans? CT? Biopsy? please feel free to PM me.

Lisa

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Mark – yes, our group over there with be listed with NORD shortly.  Finishing up with what i need to do for them!  🙂  Lisa

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