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

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.

REPLY
@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
knowledgeable about treating PM.

Dan

REPLY

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

REPLY

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

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

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
@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
@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

Liked by TJ

REPLY
@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
@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

Please send me info On your group I was just diagnosed

REPLY
@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
media’s. Thanks.

REPLY
@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.
Von

REPLY
@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

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
Please login or register to post a reply.