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.

bertbiz | @bertbiz | Aug 16, 2017
In reply to @poppy73 "It does help. It is hard to apply old hard medical information.I about dropped my tablet..." + (show)
@poppy73

It does help. It is hard to apply old hard medical information.I about dropped my tablet when I looked up the term "Messentric Panniculitis " . The information is scary and brief .Have you found the medical community to be accepting and helpful ?

I have felt like people just want to keep passing me to the next person ....

Jump to this post

Google has a lot of information, so does the support group on Facebook. https://www.facebook.com/groups/509021492520535/ It is a closed group, so you have to ask to join. I'm on both this one and that one. Really great information. The other thing I wanted to mention, exercise. I walk every day about two miles. It keeps things moving, if you know what I mean...

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Aug 16, 2017
In reply to @poppy73 "It does help. It is hard to apply old hard medical information.I about dropped my tablet..." + (show)
@poppy73

It does help. It is hard to apply old hard medical information.I about dropped my tablet when I looked up the term "Messentric Panniculitis " . The information is scary and brief .Have you found the medical community to be accepting and helpful ?

I have felt like people just want to keep passing me to the next person ....

Jump to this post

Hi @berbitz - the link above is broken but they just setup a new website and it makes it a lot easier for people who are not on Facebook. Here's the link to the group which now has 501c3 status - http://solutions2pnpd.com/. You can also just go to the search at the top of the Facebook screen and type the groups name - Solutions to Peripheral Neuropathy Pain & Discomfort. I also belong to the group and the protocol has reduced the numbness in my legs - used to be just below the knees in both legs and now it's just above the ankles. I'm happy if that is my new norm because it means it's not progressing like the neurologist said it was going to do.

Exercise definitely helps - just have to be careful not to overdo it.

John

REPLY
bertbiz | @bertbiz | Aug 16, 2017
In reply to @poppy73 "It does help. It is hard to apply old hard medical information.I about dropped my tablet..." + (show)
@poppy73

It does help. It is hard to apply old hard medical information.I about dropped my tablet when I looked up the term "Messentric Panniculitis " . The information is scary and brief .Have you found the medical community to be accepting and helpful ?

I have felt like people just want to keep passing me to the next person ....

Jump to this post

So glad to hear you're new norm is better. I agree, you can't overdo the exercise. For me, walking is plenty.

REPLY
Poppy73 | @poppy73 | Aug 17, 2017
In reply to @kanaazpereira "Hello @poppy73, I'd like to add my welcome, and thank you so much for joining us..." + (show)
@kanaazpereira

Hello @poppy73,

I'd like to add my welcome, and thank you so much for joining us here on Mayo Clinic Connect. I see that @bertbiz has given you some excellent information, and I hope @billymac65 @danrofohio @vdouglas @mardellepoff @billindc @bakb @snoopdog @dennisl27 @denia @doron @croller68 @gmeg and other members will also return to share their insights.

I think you may also find this resource helpful:
http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/home/ovc-20322158
I also encourage you to read through past posts in this discussion; they are incredibly informative.

While we wait for others to join in, what questions in particular do you have about MP?

Jump to this post

Ok the site isn't working at all from my ipad, let see if it will work from a alien ware : )

Thank you for welcoming me ! I am glad to be here. I am very happy with all the resources everyone is sharing with
me. I am taking notes.

I do have some questions.. will the doctors have to do a biopsy to diagnose this? Is there any limit to the organs this disease can
affect?

REPLY
Poppy73 | @poppy73 | Aug 17, 2017
In reply to @poppy73 "It does help. It is hard to apply old hard medical information.I about dropped my tablet..." + (show)
@poppy73

It does help. It is hard to apply old hard medical information.I about dropped my tablet when I looked up the term "Messentric Panniculitis " . The information is scary and brief .Have you found the medical community to be accepting and helpful ?

I have felt like people just want to keep passing me to the next person ....

Jump to this post

Not what you want to do when you are in pain, but I agree walk it off 🙂 Thing that is going to be tough for me is going back
to lifting once I go back to work for the school district. I may have to find a easier line of work.

REPLY
bertbiz | @bertbiz | Aug 17, 2017

The doctors don't have to do a biopsy to diagnose MP. I was diagnosed through a CT Scan. Every six months I get another CT to check if anything has changed. MP is located in the Messentary and is considered an auto-immune disease. When you do see your doctor, bring a notepad full of questions. You are your own best advocate.

REPLY
Poppy73 | @poppy73 | Aug 17, 2017

I will.So it is a auto -immune disease? Do they refer your u to a rheumatologist?

REPLY
1 reply
bertbiz | @bertbiz | Aug 17, 2017
In reply to @poppy73 "I will.So it is a auto -immune disease? Do they refer your u to a rheumatologist?" + (show)
@poppy73

I will.So it is a auto -immune disease? Do they refer your u to a rheumatologist?

Jump to this post

I have only seen a GI doctor.

REPLY
Judy147 | @judy147 | Aug 18, 2017
In reply to @kanaazpereira "Hello @judy147, Welcome to Connect; we're so glad you joined us, and thank you for sharing..." + (show)
@kanaazpereira

Hello @judy147,

Welcome to Connect; we're so glad you joined us, and thank you for sharing your history and diagnosis.

I'd like to introduce you to @billymac65 @danrofohio @vdouglas @mardellepoff @billindc @bertbiz @bakb @snoopdog @dennisl27 @denia @doron @croller68 @gmeg, all of whom have been coping with mesenteric panniculitis (MP), or have loved ones with MP; I'm confident they will share their insights and have more information that might help you.

You may find the following resource helpful to learn more about Avascular necrosis or AVN: http://www.mayoclinic.org/diseases-conditions/avascular-necrosis/basics/treatment/con-20025517

I'd encourage you to view these existing discussions on Mayo Clinic Connect:
– Early stages of avn: https://connect.mayoclinic.org/discussion/early-stages-of-avn/
– Core Decompression Surgery: https://connect.mayoclinic.org/discussion/core-decompression-surgery/
– Do you have chronic hip, knee, shoulder or other joint pain? You may have avascular necrosis: https://connect.mayoclinic.org/discussion/do-you-have-chronic-hip-knee-shoulder-or-other-joint-pain-you-may-have-avascular-necrosis/

I'm also tagging @guener @jay_baruch @sma1952 @billv123 @sebley12 @tllamber @mardigras, and hope they will return to share their experiences about steroid-induced AVN

@judy147, did you have any significant symptoms that led to the diagnosis of MP? How do you currently manage pain relief from the AVN?

Jump to this post

Thank you for your help. Sorry it has taken me so long to get back but I was having computer problems. I had gone into the ER with flank pain for possible kidney stone (which pain wasn't real bad so did not think it was a kidney stone)and was diagnosed through a CT scan. I was put on Flagyl, which caused bad side effects and had to stop. I can't say I really have symptoms other than I have a feeling like some thing is there in my epigastric area and bad reflux. I have been dealing with this for a couple of years. I do get a feeling of nausea at times but it is mild. I have seen a gastroenterologist for this and he did an endoscopy and said I had some gastritis and to watch what I eat. I have been on Nexium for years but it really does not help. I was referred to a general surgeon from the ER and had an UGI and an esophageal manometry done. UGI showed a small sliding hiatal hernia, still waiting on the esophageal manometry results. Can my reflux be caused by the MP? In my readings so far, I have not seen this as a symptom. There is a procedure they can do to help the GERD but it involves surgery and I have read that surgery could aggravate it. Any and all information will be appreciated.

REPLY
Poppy73 | @poppy73 | Aug 21, 2017
In reply to @amilhim "is there a cure for Mesenteric Panniculitis? someone I know has just been diagnosed with this..." + (show)
@amilhim

is there a cure for Mesenteric Panniculitis? someone I know has just been diagnosed with this disease after so many years of episodic abdominal pain and apparently wrong diagnosis. she is in her late seventies, is it normal at this age?

Jump to this post

43 here!

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