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

Hi @jamokl246 I'm sad to hear about a rush to diagnosis in your case. Have you had a CT done? When I was initially diagnosed in 2014, I had already had 3 CTs in my abdominal area and to rule out anything more ominous (lymphoma, because the inflammations were growing), I had a surgical biopsy which clearly showed MP. Has this option been given to you? Not sure about MP body habits? When I came out of remission in August 2017, one of the 'tell tale' signs was rapid weight loss. Being 'too' thin, actually makes sense because you have no appetite with this disease. There is always the possibility that you may have more than one thing going on as well, so I wouldn't entirely rule out IBS, but I would expect that you should at least have a CT done, just to be a little more confident in your diagnosis. I hope this helps you at your next appointment and good luck. We have all been there with disbelievers lol!

Liked by jarnold246

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@kimh

Hi @jamokl246 I'm sad to hear about a rush to diagnosis in your case. Have you had a CT done? When I was initially diagnosed in 2014, I had already had 3 CTs in my abdominal area and to rule out anything more ominous (lymphoma, because the inflammations were growing), I had a surgical biopsy which clearly showed MP. Has this option been given to you? Not sure about MP body habits? When I came out of remission in August 2017, one of the 'tell tale' signs was rapid weight loss. Being 'too' thin, actually makes sense because you have no appetite with this disease. There is always the possibility that you may have more than one thing going on as well, so I wouldn't entirely rule out IBS, but I would expect that you should at least have a CT done, just to be a little more confident in your diagnosis. I hope this helps you at your next appointment and good luck. We have all been there with disbelievers lol!

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I almost wish for weight loss with my MP. But I had 2 CT scans, initially looking for kidney stones. First scan was without contrast and the enlarged lymph nodes were clearly visible. Repeated the CT with contrast and the look like Christmas lights. Also a subtle psuedocapsule and increased attenuation at the Mesenteric root. What does all that mean? Little nuclear bombs going off across my lower left abdomen and across my left side into my left middle back. Osteoarthritis showed up nice and clear as well, lower spine, SI joint. Get both of the going and it's a bad day. My primary care is caring but clueless, she put me on a week's dose of Prednisone, I think she googled that in the other room. I had much relief but it wore off after 2 weeks or so. Sent me to GI, had a clean colonoscopy, she said come back in 6 months for another CT, if same or worst she'll do a biopsy. YAY. GI said she doesn't do steroids or painkillers and referred to a pain management clinic, just last week I rounded up all my records for last 2 years, MRI, CTs, x-rays, blood works. Everybody seems clueless or uncaring. I don't think it's diet related, I believe it's more complicated than that into the autoimmune system realm. My neighbor stumped doctors for years with an autoimmune problem, not MP but bizarre pain in neck and arms and inflamed lymph nodes throughout his upper body. Anyway, good luck. God blessed me with a high pain tolerance.

Liked by jarnold246

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@kimh

Hi @jamokl246 I'm sad to hear about a rush to diagnosis in your case. Have you had a CT done? When I was initially diagnosed in 2014, I had already had 3 CTs in my abdominal area and to rule out anything more ominous (lymphoma, because the inflammations were growing), I had a surgical biopsy which clearly showed MP. Has this option been given to you? Not sure about MP body habits? When I came out of remission in August 2017, one of the 'tell tale' signs was rapid weight loss. Being 'too' thin, actually makes sense because you have no appetite with this disease. There is always the possibility that you may have more than one thing going on as well, so I wouldn't entirely rule out IBS, but I would expect that you should at least have a CT done, just to be a little more confident in your diagnosis. I hope this helps you at your next appointment and good luck. We have all been there with disbelievers lol!

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Hi @kimh. Yes I had a CT done when I was in er. Radiologists diagnosed me with MP. Then a re read the next day never mentioned it. I had a 3rd radiologist look and he said he would not have called the mp out on the report. Frustrating! No there has been no mention of biopsy or anything. Just going with the flow. Meanwhile I have pain all the time. I have had ibs for 20 years. This is not a new thing to me and I know what that feels like. This is entirely different. I started with right upper quadrant pain and I still have that. Now for the last 2 days I have had left lower quadrant pain to the point it woke me up several times last night. I'm just frustrated and at a loss. I appreciate your response. I may send my ct to mayo to see if I really have this or not. Lots of back story here too. I grew up in an area where Monsanto had dumped radioactive waste near a creek where I played as a child. Now there are cluster cancers being discovered. Google cold water creek if interested. It's a bit frightening.

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Yikes! Well a biopsy would be definitive. I'm not sure if I was born with it, but I have heard that symptoms can present themselves in three different circumstances, which are: underlying condition of lymphoma (not me thankfully), abdominal surgeries (I have had several), or severe back trauma. My symptoms came on two weeks to the day of a horrible fall on black ice. My specialist believes 100% that my symptoms were brought on by the fall. For pain management, I am on CBD oil, Targin (oxybased, mild slow release that does not constipate) and percocet for breakthrough pain. I hope this helps you.

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@kimh

Yikes! Well a biopsy would be definitive. I'm not sure if I was born with it, but I have heard that symptoms can present themselves in three different circumstances, which are: underlying condition of lymphoma (not me thankfully), abdominal surgeries (I have had several), or severe back trauma. My symptoms came on two weeks to the day of a horrible fall on black ice. My specialist believes 100% that my symptoms were brought on by the fall. For pain management, I am on CBD oil, Targin (oxybased, mild slow release that does not constipate) and percocet for breakthrough pain. I hope this helps you.

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I get some relief from complete stillness, not laying or sitting on left side, naproxen, and a dwindling supply of Vicodin. Hoping pain management doctors can help me.

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@kimh

Hi @jessienalu, I agree that you absolutely need real help. Having said that, I am my GP's and GI's only patient with this disease and they are coordinating my health care. As long as your doctor is comfortable reaching out to colleagues for advice, you should be okay. There is no cure unfortunately and not much reading out there, but we can all share our experiences with one another to help. The one thing that I have noticed is that this relapse is quite different than when I was previously diagnosed almost 5 years ago. There is a lot of trial and error involved as well as keeping stress to a minimum and certain physical activities as well (sweeping, cleaning windows and….sad to say….yoga!)

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Thank you. I was at the doctors today. Seems like things are «looking up». I found out today that she had previously referenced me to the wrong specialist. She referenced me to some sort of cancer department, and not a gastro specialist. They told her to do a stool test of me and get me an appointment with a gastro specialist. So that’s what she did. Can’t wait to meet and speak to a specialist that hopefully can help me out.
What you are writing at the end just made me have an epiphany. That explains everything. Why I’m rolling on the floor with abdominal pain after I try to do yoga or walk up a lot of stares. I just thought it was menstrual cramps, even though I didn’t have my period. Wow. I am blown away. I have a lot to think about now 😅

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@jarnold246

Hi @kimh. Yes I had a CT done when I was in er. Radiologists diagnosed me with MP. Then a re read the next day never mentioned it. I had a 3rd radiologist look and he said he would not have called the mp out on the report. Frustrating! No there has been no mention of biopsy or anything. Just going with the flow. Meanwhile I have pain all the time. I have had ibs for 20 years. This is not a new thing to me and I know what that feels like. This is entirely different. I started with right upper quadrant pain and I still have that. Now for the last 2 days I have had left lower quadrant pain to the point it woke me up several times last night. I'm just frustrated and at a loss. I appreciate your response. I may send my ct to mayo to see if I really have this or not. Lots of back story here too. I grew up in an area where Monsanto had dumped radioactive waste near a creek where I played as a child. Now there are cluster cancers being discovered. Google cold water creek if interested. It's a bit frightening.

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Hello @jarnold246. Is your doctor aware of the environmental exposure you have had? If not, this might be a good topic of conversation. I know how uncomfortable abdominal pain can be.

Have you found anything that helps ease the pain, either meds, exercise or a liquid/soft diet for several days with bed rest?

Liked by lioness

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@lisas444

Hi there, I saw your posts on here about SM and MP. We have a support group with 57 members if you’re interested. It’s a private group to be able to share, support, receive support, doc info, meds, etc. I’m a mom with a pediatric kid with SM. Please write back I can give you the contact info if you’d like. No, it’s not the yahoo group either. That site has information in files, but not a very good support based group and of sharing and talking. We have 57 members on ours and unbelievable communication and support throughout ALL the members!!

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I have sent you a friend request on Facebook.

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@jnelson210

I have sent you a friend request on Facebook.

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Welcome to Connect, @jnelson210. We look forward to getting to know you. What symptoms are you currently experiencing? How is your MP being managed?

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I am a 58 year old female. For the past 3 months I have been experiencing chronic pain in the abdominal area (different places, upper and lower, front, back and both left and right sides). I have experienced these pains on and off for the past 3 years. I have had several C-Scans over the years. This time they compared the mesentery and also did blood work and came to the conclusion that I have MP. My GI has only had one patient with this so he is going to consult with others in order to find out possible treatments. I am also diabetic so that poses some issues with some of the recommended medications. I appreciate all the posts giving some idea of what this strange thing is.

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I was told two weeks ago that a CT scan without contrast done in the ER when I was there for apparent food poisoning and dehydration showed Mesenteric Panniculitis. A radiology note recommended follow up testing. I have appointment with PCP in a few more weeks. Found this discussion when looking for more info on the subject. Trying not to get too overwhelmed, so I haven’t read all the posts here yet. The acute situation has subsided especially since finishing the round of flagyl. Still having an aversion to most foods and sporadic epigastric pain and abdominal tenderness. Bowels still not normal. Extremely fatigued but back to work. I have had a long personal and family history of various autoimmune-type symptoms and diagnoses. And looking back a lot of my various health issues that I have basically just “lived with” for my 55 years could possibly be related. I want to be proactive but not overreactive. Guess I may know more in a few weeks after further testing.

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@colleenyoung

Welcome to Connect, @jnelson210. We look forward to getting to know you. What symptoms are you currently experiencing? How is your MP being managed?

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I have been experiencing pain in my abdominal area almost every day. I have been having about one or two good days a week for the past three months which means I am able to function almost normally. Usually the pain comes with swelling. Sometimes the swelling includes my whole abdominal area and sometimes there is hard knot area that may be the size of a baseball. It comes and goes in different areas.
Since I am new to this…since it deals with the fat cells, what happens if I lose weight? I am currently about 20 lbs over weight. Would losing weight help?
I have not been able to find any physician in the Houston area that knows anything about this. Does anyone know of anyone?
Some of my family is recommending that I go to the Mayo Clinic. How long does it usually take to get an appointment?

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@jnelson210

I have been experiencing pain in my abdominal area almost every day. I have been having about one or two good days a week for the past three months which means I am able to function almost normally. Usually the pain comes with swelling. Sometimes the swelling includes my whole abdominal area and sometimes there is hard knot area that may be the size of a baseball. It comes and goes in different areas.
Since I am new to this…since it deals with the fat cells, what happens if I lose weight? I am currently about 20 lbs over weight. Would losing weight help?
I have not been able to find any physician in the Houston area that knows anything about this. Does anyone know of anyone?
Some of my family is recommending that I go to the Mayo Clinic. How long does it usually take to get an appointment?

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When I was first trying to get an appointment at Mayo here in Phoenix, the wait was about 3 months. But they said keep calling everyday to see if there was a cancellation or they could work me in and I got lucky. They got me in within 3 weeks. So don't give up

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@adrussell

Just recently diagnosed with this condition, have ran ANA and was positive for inflammation. Had colonoscopy to rule out any tumors, diverticulitis, etc. All was good there. No waiting for more tests to be scheduled to see if there is an underlying cause. I have suffered from kidney stone for last 12 years. Actually went to er thinking I had another stone when they discovered the MP because of the enlarged lymph nodes and swelling. Anyone else suffer from this, have information they can share, etc. My family Dr. is really good about researching and referring to other Drs. when he doesn't know. Just seems there isn't much information about this condition.

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Hello @adrussell, welcome to Mayo Clinic Connect. There is another active discussion on MP where your post will have more visibility. I'm tagging our moderator @kanaazpereira to see if we should move your post to the following discussion where you can meet others with similar health symptoms and learn more about MP. You may want to read through some of the discussion below and post any questions you might have there until other members respond.

Groups > Digestive Health > Mesenteric Panniculitis or Sclerosing Mesenteritis
https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

The National Organization for Rare Disorders has more information on Mesenteric Panniculitis here:
https://rarediseases.org/rare-diseases/mesenteric-panniculitis/

Do you have any specific questions you are trying to get answered?

John

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Hello everyone, recently diagnosed with MP. Went to ER with what I thought was just another kidney stone turns out it wasn't but it was MP. had several enlarged lymph nodes in the lining and severe pain. My family dr. has ran several test checking for autoimmune. The ANA came back positive, he ordered a colonoscopy to rule out any colon issues, all was clear there. So now back to drawing board waiting to see what other tests he wants to do. Can't seem to find out what has caused this. My paternal grandmother had multiple autoimmune diseases, I also have a cyst on my right kidney and have suffered from kidney stones for last 12 years. I have had mono twice in my life time. once at 13 and another time at age 22. Second time I was in bed for a solid week going and getting a shot everyday for the swelling in my throat and ears. I am looking for any information to help me cope with this condition. I have low grade fever, body aches (like flu), and the pain in my side. Steroids have helped with the swelling which has reduced pain. Still have occasional flare up of pain. I just want to feel normal.

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