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.

danrofohio | @danrofohio | Mar 6, 2015
In reply to @vdouglas "Hello all, I am 63 year old male T2 Diabetic with Mitral Valve Prolapse Syndrome and..." + (show)
@vdouglas

Hello all, I am 63 year old male T2 Diabetic with Mitral Valve Prolapse Syndrome and accompanying PVC's. I have lived most of my life trying to deal with these issues and thought I could take no more. Then, just recently I thought I was passing another kidney stone so headed to my clinic. The pain became intense on the way there so I had to head directly to the Hospital ER. Had CT without contrast done, it returned a note of Panniculitis and described the location. A follow up CT w/contrast confirmed Mesenteric Panniculitis. I Was sent to Gasterentologist who turned out to be a Physicians Assistant. She scheduled me for a Colonoscopy. I feel like she is ordering this because she doesn't know what else to do. Since this is a rare disorder I would like to be dealing with an experienced Physician. Can anyone point me in the right direction? I would certainly appreciate the help.

Jump to this post

I suggest that you contact Dr. Pardi at Mayo Clinic. He is experienced and<br />
knowledgeable about treating PM.<br />
<br />
Dan<br />
<br />
-<br />

REPLY
Von, Alumni Mentor | @vdouglas | Mar 6, 2015

Thanks Dan, appreciate the info.
Dr.'s are hard to contact nowdays. Do you know if he is reachable by email?

REPLY
LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Mar 6, 2015

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

REPLY
4 replies
S Jackson | @mommasaid | Mar 11, 2015

I am new to this site I was recently diagnosed with messenteric paniculitis
I have abdominal pain at nite maybe I am too busy to notice during day but it wakes me up I am told mine is mild I am short wasted and it usually is my entire abdomen that hurts sometimes radiating outward and sometimes brought on when I turn on my side sometimes it is just the lower abdomen Does anyone experience this Is there a special diet? Thanks

REPLY
2 replies
Von, Alumni Mentor | @vdouglas | Mar 11, 2015

Hello everyone.
Just wondering if anyone knows of an experienced Gastroenterologist at Mayo Phoenix or one in the Las Vegas, Nevada or Salt Lake, Utah area.

Also, has anyone been given Naproxen long term? I was given this with Hydrocodone after ER visit and the combination helped the pain. After about 3 or 4 days it was gone (knocking on wood). I still feel like my right kidney is a little sore.

REPLY
Von, Alumni Mentor | @vdouglas | Mar 20, 2015
In reply to @lisas444 "Bill: This is not necessarily an auto-immune disease. It can be attributed to it BUT it..." + (show)
@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

Jump to this post

Hi Lisa, I had a Gastro tell me the other day that it was caused because my type 2 diabetes was borderline out of control, A1C of 7. Ever hear this from anyone? I'm not sure if I believe it.
Von

REPLY
sue62 | @sue62 | Mar 29, 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 am Sue from KnoxvilleTN. I was just diagnosed 3 days ago To see GI mid. April. I have read what I can find about mesentery panniculitis.would love a support group if you can give me contact info

REPLY
sue62 | @sue62 | Mar 29, 2015
In reply to @mommasaid "I am new to this site I was recently diagnosed with messenteric paniculitis I have abdominal..." + (show)
@mommasaid

I am new to this site I was recently diagnosed with messenteric paniculitis
I have abdominal pain at nite maybe I am too busy to notice during day but it wakes me up I am told mine is mild I am short wasted and it usually is my entire abdomen that hurts sometimes radiating outward and sometimes brought on when I turn on my side sometimes it is just the lower abdomen Does anyone experience this Is there a special diet? Thanks

Jump to this post

S Jackson I also newly diagnosed. Same pain. I would also like any info. Diet changes? Does it usually go away?

REPLY
TJ | @grneyedgemini | Apr 12, 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 join your group

REPLY
TJ | @grneyedgemini | Apr 12, 2015

Please send me info On your group I was just diagnosed

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