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

@susierq111

What type of diet did they suggest for you? No one I’ve seen can help me with diet.

Jump to this post

Hi @rips72,
I have been using the FODMAP diet for about a year. It really has made all the difference in the world for me. Suggestion: when you try to add a new food, a new veggie, take a Beano. My GI Doc suggested it would help break down foods. I haven’t been able to eat Asparagus or onions yet without a big problem. The other thing I suggest is walking. If you walk once a day, it doesn’t have to be fast or a long walk, it helps keep things moving, no pun intended.

REPLY
@susierq111

What type of diet did they suggest for you? No one I’ve seen can help me with diet.

Jump to this post

No one actually suggested the diet, I just researched it myself and discussed it with my daughter who is a Registered Nurse. The diet is basically the one for IBS, and is called FODMAP. I found the diet at IBSDiets.org. It is very similar to an Atkins diet. As an example, I had fried eggs and ham for breakfast, with no potatoes or bread. I didn’t eat lunch (which is not recommended) and had a hamburger steak with tomatoes, and a small salad with Italian dressing for supper. So far I have been able to eat these meals with far less pain in my right side. However, I just started it 5 days ago, and will update everyone after being on for a few weeks. One big benefit is that I might even drop a few pounds

REPLY
@rips72

I was diagnosed with MP last Thursday after a CT scan. Currently waiting on an appointment with the surgeon to confirm whether or not I actual have MP.

Jump to this post

.

REPLY

For any who would like to share any issues with medical care for this disease here is a group specifically for that issue to share express concerns on care and any issues with the care, in positive constructive way, and support, encourage others having same or similar issues.
Here is the link. It is a secret Facebook group and any with diagnosis of this disease and their loved one helping them can join. Just go to this link or message me here to add you.
https://www.facebook.com/groups/790843481085446/

REPLY
@susierq111

What type of diet did they suggest for you? No one I’ve seen can help me with diet.

Jump to this post

Hello @rips72          Hello, I'm glad you came to this site. Sorry to hear you were not able to get into the Mayo in Az. My initial diagnosis and symptoms sound similar to yours with the right side pain. My pain was flank pain similar to kidney stone pain. I was not able to eat and was given pain meds followed by Naproxen. The Naproxen actually seemed to cause the pain to subside. It did take about 6 weeks if I remember correctly. That was in Nov. 2014, today my symptoms have subsided, I am now asymptomatic. I was blessed to have been able to meet with Dr. Pardi at the Mayo in Rochester. One of the things I have learned is that the newer CT's are more sensitive thus there have been a greater number of possible MP cases reported. Most GP Doctors don't know what it is or how to deal with it. Have you been given any type of anti inflammatory medications? Glad to hear the diet is helping.
Best wishes,@vdouglas

REPLY

I have had this for 17 years i know what you mean about dr and diagnosis. And finding help. Mayo is one of few places you can find anything about this. My internal med dr said live with it. My gastro dr wants to do colonscopy again. Ive given up. Dr pardini probably spelled wrong at mayo is only dr ive heard of who knows about this i cant afford to go to him. Hopefully you find answers good luck

REPLY

I’m anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That’s when I start getting a bit of abdominal pain. When I try to eat or drink, I can’t keep anything down. That’s when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn’t digested. That has happened 5 times since 2011; though I’ve had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have “mild MP”. (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it’s “gastrotis”, “the flu”, “a stomach bug”, and “gastroparesis”. I have another report that I compared it to from 2015, which doesn’t mention ANYTHING about MP. Nor does the one I have from 2011. So… this is new??? I’m only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I’m SO SICK of being told “it’s just the FLU” that, at this point, I would almost rather be told it’s lymphoma.

REPLY

@chensley638 Hello and welcome to Mayo Connect! This is a place to vent and express your feelings – we are glad to have you join our online community. It does sound like you have had a lot of symptoms without a clear cut diagnosis. Share with us, if you are comfortable, the type of specialist you have seen for the inflamed lymph nodes and bone pain. With the variety of symptoms you mention it might be wise to seek out a large medical center like Mayo (clinics in Minnesota, Florida and Arizona) or a large university medical center. Have you considered a second opinion? Teresa

REPLY

@chensley638 Here is some information regarding Mesenteric Panniculitis from Mayo’s website which you may find helpful, http://www.mayoclinic.org/diseases-conditions/mesenteric-lymphadenitis/home/ovc-20214655. Also, please read the posts from others on this page. You might find their experiences helpful as well. Teresa

REPLY
@hopeful33250

@chensley638 Hello and welcome to Mayo Connect! This is a place to vent and express your feelings – we are glad to have you join our online community. It does sound like you have had a lot of symptoms without a clear cut diagnosis. Share with us, if you are comfortable, the type of specialist you have seen for the inflamed lymph nodes and bone pain. With the variety of symptoms you mention it might be wise to seek out a large medical center like Mayo (clinics in Minnesota, Florida and Arizona) or a large university medical center. Have you considered a second opinion? Teresa

Jump to this post

Hi thank you for your reply. I have not seen any Specialists that’s far. My doctor didn’t even mention it to me. Nor did the supervising ER doctor I saw when I have the CT done. I actually work for a rheumatologist. I had a plethora of lab workup done. It did show elevated CRP which was 2.83 period ESR was 45. Wbc’s where 15.6. My vitamin D was low at 26.4. So he said he felt I had an infection of some sort because all of my autoimmune labs for things like scleroderma, lupus, RA, Sjorgens, etc were negative. Today I go to see a GI specialist for my symptoms. But MP was not mentioned in the referral at all. I didn’t even know I had it until last night when I read the report from the CT. I will update after my appointment. On a side note, I guess I just feel like an idiot because I had no idea about any of this. And MP is not something I’ve ever seen in our Clinic. To be honest it’s not something I had ever heard of before.

REPLY
@hopeful33250

@chensley638 Here is some information regarding Mesenteric Panniculitis from Mayo’s website which you may find helpful, http://www.mayoclinic.org/diseases-conditions/mesenteric-lymphadenitis/home/ovc-20214655. Also, please read the posts from others on this page. You might find their experiences helpful as well. Teresa

Jump to this post

Thank you for your reply. I did go through a few pages last night but there was so much to read I couldn’t get to all of them. From just the first two pages alone, I felt like I was reading my own medical report. I will definitely follow up on all of and, if it’s okay, I’ll provide an update once I’m out of the doctor’s office.

REPLY
@hopeful33250

@chensley638 Here is some information regarding Mesenteric Panniculitis from Mayo’s website which you may find helpful, http://www.mayoclinic.org/diseases-conditions/mesenteric-lymphadenitis/home/ovc-20214655. Also, please read the posts from others on this page. You might find their experiences helpful as well. Teresa

Jump to this post

Sent you a pm on here …

REPLY
@hopeful33250

@chensley638 Here is some information regarding Mesenteric Panniculitis from Mayo’s website which you may find helpful, http://www.mayoclinic.org/diseases-conditions/mesenteric-lymphadenitis/home/ovc-20214655. Also, please read the posts from others on this page. You might find their experiences helpful as well. Teresa

Jump to this post

@chensley638 Yes, please feel free to update us, as you feel comfortable doing so. We look forward to hearing from you! Teresa

REPLY
@chensley638

I’m anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That’s when I start getting a bit of abdominal pain. When I try to eat or drink, I can’t keep anything down. That’s when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn’t digested. That has happened 5 times since 2011; though I’ve had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have “mild MP”. (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it’s “gastrotis”, “the flu”, “a stomach bug”, and “gastroparesis”. I have another report that I compared it to from 2015, which doesn’t mention ANYTHING about MP. Nor does the one I have from 2011. So… this is new??? I’m only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I’m SO SICK of being told “it’s just the FLU” that, at this point, I would almost rather be told it’s lymphoma.

Jump to this post

Hello @chensley638, @seaotter,

Welcome to both of you! I’d like to underline what Teresa mentioned: Connect is a place to vent and express your feelings, and to share experiences so that we may learn from each other – we are so happy to have you as part of the Connect community.

I’d like to introduce you to several other members in this ongoing discussion; please meet @vdouglas @warlick @viva @bakb @doron @billymac65 @croller68 @bertbiz @mardellepoff @billindc @mommasaid @danrofohio @snoopdog @gmeg, to name a few.

@seaotter, @chensley638, I’m sure you have lots of questions, and there’s a great group of people here ready to share their experiences. Ask away.

REPLY
@chensley638

I’m anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That’s when I start getting a bit of abdominal pain. When I try to eat or drink, I can’t keep anything down. That’s when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn’t digested. That has happened 5 times since 2011; though I’ve had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have “mild MP”. (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it’s “gastrotis”, “the flu”, “a stomach bug”, and “gastroparesis”. I have another report that I compared it to from 2015, which doesn’t mention ANYTHING about MP. Nor does the one I have from 2011. So… this is new??? I’m only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I’m SO SICK of being told “it’s just the FLU” that, at this point, I would almost rather be told it’s lymphoma.

Jump to this post

Thank u so much. Its lonely out here with no one to talk to about mp. My dr just says youve had it for along time and no help . Ive had pet scans ct scans to gi dr
And none know what to do reading posts saw someone had low vit d my vit d level was 8 and i am one who siscovered it. Will read more posts maybe we can figure out how to cope with this.
Thanks for listening

REPLY
Please login or register to post a reply.