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

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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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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@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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@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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Thank you John. I see where others discuss specific diets to control inflammation, more information on that would be great. Also, what other testing can be done to determine possible causes and treatments of the condition.

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@adrussell

Thank you John. I see where others discuss specific diets to control inflammation, more information on that would be great. Also, what other testing can be done to determine possible causes and treatments of the condition.

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I wished I had some answers for you but I'm hoping one of the members in the Mesenteric Panniculitis or Sclerosing Mesenteritis discussion will be able to offer some suggestions. I did find a Mayo Clinic page that discusses a related diet that I think might apply and also another page on FODMAP diets here:

The role of lifestyle-related treatments for IBS
https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/the-role-of-lifestyle-related-treatments-for-ibs/mac-20431272

Low FODMAP Diet for IBS: List of Foods to Eat and Avoid
https://www.medicinenet.com/low_fodmap_diet_list_of_foods_to_eat_and_avoid/article.htm#fodmap_foods_for_ibs_definition_and_facts

REPLY

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.

REPLY

Hi @adrussell,

I moved your discussion and combined it with this existing discussion as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

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@kanaazpereira

Hi @adrussell,

I moved your discussion and combined it with this existing discussion as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

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Thank you

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@mgor

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.

Jump to this post

I feel your frustration. I am right there with you. I recently had the colonoscopy done to verify there was no underlying issues there causing it. All was good. My ANA blood work came back positive with inflammation so I am waiting to see what other tests the dr. wants to do to try and narrow down a more specific autoimmune disease. Other wise we are thinking that all the lithotripsy's Ive had on Kidneys is the cause however the last one I had was in June. Hang in there.

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