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.

miker46 | @miker46 | Nov 15, 2016
In reply to @miker46 "Hello all, I'm still dealing with this annoying condition. My GP has put me on a..." + (show)
@miker46

Hello all,

I’m still dealing with this annoying condition. My GP has put me on a ‘burst’ treatment of prednisone 40mg/day for 7 days. I’m on day 6 and don’t feel any different. Still minor pain (probably equivalent to a toothache), in the lower left quadrant/pelvis. When I spoke to the GI doc, he indicated to me that if I could manage the pain, to stay off of prednisone because of the side effects. The only reason I decided to try the drug was because I’m travelling overseas to Thailand for a month (December) and thought I should bring a prescription with me..but my doc suggested I take it now. I’m pretty sure this is going to lead to a longer dose — which I’m apprehensive about taking. I think I may just go back to pain management. The frustrating part is the lack of knowledge from the medical community. There doesn’t seem to be any “plan” to combat this situation.

Regarding the food and diet suggestions listed here in this forum. Is there any research supporting this? Can someone post a link? I monitor my food pretty closely for general diet/health purposes, I don’t see any direct connection to what I’ve eaten and how I feel.

Oh..does anyone feel better when standing/lying down? I find the pain worsens when I’m sitting…just curious if anyone else experiences this.

Thanks,
Mike

Jump to this post

Hi Roberta,

Thanks for the response. Yes, I’m dealing with MP.

I agree, moving/exercise keeps the pain in check. The more I move, the more I forget about it…and like I said, when I’m sitting it’s the worse (and sadly I have an office job — think I may invest in a standing desk for work).

Regarding the FODMAP stuff – where did you first hear about this? Why did you decide to start a diet for an unrelated condition (is it not for IBS sufferers?)

Thanks again,
Mike

REPLY
bertbiz | @bertbiz | Nov 15, 2016

I’m so glad you found us and I’m so glad you’re here. It was really helpful for me, as well. Good luck and keep us posted.

REPLY
bertbiz | @bertbiz | Nov 15, 2016
In reply to @miker46 "Hello all, I'm still dealing with this annoying condition. My GP has put me on a..." + (show)
@miker46

Hello all,

I’m still dealing with this annoying condition. My GP has put me on a ‘burst’ treatment of prednisone 40mg/day for 7 days. I’m on day 6 and don’t feel any different. Still minor pain (probably equivalent to a toothache), in the lower left quadrant/pelvis. When I spoke to the GI doc, he indicated to me that if I could manage the pain, to stay off of prednisone because of the side effects. The only reason I decided to try the drug was because I’m travelling overseas to Thailand for a month (December) and thought I should bring a prescription with me..but my doc suggested I take it now. I’m pretty sure this is going to lead to a longer dose — which I’m apprehensive about taking. I think I may just go back to pain management. The frustrating part is the lack of knowledge from the medical community. There doesn’t seem to be any “plan” to combat this situation.

Regarding the food and diet suggestions listed here in this forum. Is there any research supporting this? Can someone post a link? I monitor my food pretty closely for general diet/health purposes, I don’t see any direct connection to what I’ve eaten and how I feel.

Oh..does anyone feel better when standing/lying down? I find the pain worsens when I’m sitting…just curious if anyone else experiences this.

Thanks,
Mike

Jump to this post

My GI doctor & the nurse practitioner gave me the FODMAP diet guidelines. I was told it was for IBS sufferers as well as any inflammatory intestinal condition. It really has helped me a lot. I have an office job as well. I try to get up and stretch once an hour or so.

REPLY
Doron | @doron | Nov 15, 2016
In reply to @miker46 "Hello all, I'm still dealing with this annoying condition. My GP has put me on a..." + (show)
@miker46

Hello all,

I’m still dealing with this annoying condition. My GP has put me on a ‘burst’ treatment of prednisone 40mg/day for 7 days. I’m on day 6 and don’t feel any different. Still minor pain (probably equivalent to a toothache), in the lower left quadrant/pelvis. When I spoke to the GI doc, he indicated to me that if I could manage the pain, to stay off of prednisone because of the side effects. The only reason I decided to try the drug was because I’m travelling overseas to Thailand for a month (December) and thought I should bring a prescription with me..but my doc suggested I take it now. I’m pretty sure this is going to lead to a longer dose — which I’m apprehensive about taking. I think I may just go back to pain management. The frustrating part is the lack of knowledge from the medical community. There doesn’t seem to be any “plan” to combat this situation.

Regarding the food and diet suggestions listed here in this forum. Is there any research supporting this? Can someone post a link? I monitor my food pretty closely for general diet/health purposes, I don’t see any direct connection to what I’ve eaten and how I feel.

Oh..does anyone feel better when standing/lying down? I find the pain worsens when I’m sitting…just curious if anyone else experiences this.

Thanks,
Mike

Jump to this post

Hi there,I have had MP for over 5 years and
have been able to address the symptoms with diet.  I have never taken steroids even when I am was in terrible pain.  I have seen Dr.
Ehrenpreis in Chicago, who specializes in MP, and he is an amazing
doctor and basically said that if you can control it with diet then
don't take medicine.  All my research on the autoimmune side of MP (I
have been told that not all cases are autoimmune related) is that
everything is caused by a leaky gut.  This is why FODMAP works for so
many people.  I, on the other hand, used the Paleo Autoimmune protocol. 
It completely held things in check for me, and I would go on and off the
diet when symptoms arose.  Unfortunately, I cheated all summer which
led to some other issues, and the diet wasn't helping me as much.As
such I did more research and found other resources (in the field of
functional medicine) that have helped me control my symptoms again. 
Each person is different and their body's react to foods differently,
and as such if FODMAP doesn't work for you, read the articles of the
Paleo Mom.  She seems to look at things more scientifically, and
understands that some folks need to be on FODMAP and some just need to
be on an autoimmune diet. The great thing about the Paleo autoimmune
protocol is that you can add food back and you just figure out what your
body reacts to.  In addition to the Paleo Mom I recommend
listening and reading articles by Dr. Mark Hyman (who heads the
functional medicine department at the Cleveland Clinic) and Dr. Chris
Kresser.  In addition to dieting, I actually started taking the supplements recommended by Dr.
Chris Kresser (http://my.chriskresser.com/the-supplement-guide/) , and not only have my symptoms gone away, but for the first time in 11 years I no longer need to take Zantac 2 to 3 timies a day.In January, I plan on visiting with a Functional Medicine doctor and getting food testing.  Please listen to Dr. Kresser in that not all food testing labs are equal.   Unfortunately, it isn't covered by insurance and is expensive, but my positive results so far are giving me confidence that it is worth the expense.  I hope this helps at least one person, since it helped me.take care,Doron

REPLY
denia | @denia | Nov 19, 2016
In reply to @bertbiz "Hi Lynn, I am so sorry you are having so much trouble finding a doctor. But..." + (show)
@bertbiz

Hi Lynn, I am so sorry you are having so much trouble finding a doctor. But that is why they call it the “practice” of medicine. The problem with MP and other diseases like it, is you have to turn into the best advocate for yourself. You have to INSIST on being seen. That’s what I had to do. I called on a Thursday and talked to the nurse practitioner and said “This is how it’s going to go…I’m going to be seen by a doctor tomorrow morning, have a CT Scan and have answers by the end of the day.” That’s exactly what happened. That’s when I got my diagnosis of MP. It is so rare, the radiologist that read my scan had never seen a case, just read about it. By the following week I was in the GI doctor’s office and was on prednisone by the end of that week. I can’t stress enough about becoming your own best advocate! Do your research, find out what the options are. If you don’t like the current doctor, find a different one. I sound a little soap-boxy, sorry. I also started on the FODMAP diet. I talk about that all the time. It was so helpful for me. I was able to eat and put back on the weight I had lost. I felt stronger and healthier. It’s a long road, as you know too well. I don’t get the whole “dermatologist’ thing. Stay strong. We are all here for you. It’s a great resource.

Roberta

Jump to this post

I am at the very beginning of my diagnosis and am wondering if I should just begin with a doctor that is familiar with MP. I have been having excruciating pain in my right upper quadrant (no gall bladder) with diarrhea off and on, bloating, indigestion etc. They found the MP on a CT scan. I have an appt with gastro next week, but want to find someone in my area that is familiar with treating this. I live in Dallas, any suggestions?

REPLY
viva | @viva | Nov 19, 2016

I too am early in my diagnosis. I am currently seeing a general practitioner and also a surgeon. Neither, from what I can tell are really familiar with MP. I have had two ct scans. The second was ordered by the surgeon. Since there was no signs of increase in size of the growths, we are on a wait and see mode with him. My GP has decided to get a second opinion. Waiting on the appt. I would suggest you attempt to find someone familiar with MP regardless to what letters are behind their name. That seems to be the challenge!

REPLY
12 replies
denia | @denia | Nov 19, 2016
In reply to @viva "I too am early in my diagnosis. I am currently seeing a general practitioner and also..." + (show)
@viva

I too am early in my diagnosis. I am currently seeing a general practitioner and also a surgeon. Neither, from what I can tell are really familiar with MP. I have had two ct scans. The second was ordered by the surgeon. Since there was no signs of increase in size of the growths, we are on a wait and see mode with him. My GP has decided to get a second opinion. Waiting on the appt. I would suggest you attempt to find someone familiar with MP regardless to what letters are behind their name. That seems to be the challenge!

Jump to this post

Thank you! Good to know.

REPLY
Von, Alumni Mentor | @vdouglas | Nov 19, 2016
In reply to @viva "I too am early in my diagnosis. I am currently seeing a general practitioner and also..." + (show)
@viva

I too am early in my diagnosis. I am currently seeing a general practitioner and also a surgeon. Neither, from what I can tell are really familiar with MP. I have had two ct scans. The second was ordered by the surgeon. Since there was no signs of increase in size of the growths, we are on a wait and see mode with him. My GP has decided to get a second opinion. Waiting on the appt. I would suggest you attempt to find someone familiar with MP regardless to what letters are behind their name. That seems to be the challenge!

Jump to this post

Hello @viva (and @denia),I just wanted to give my opinion regarding seeing a Doctor with experience treating MP. I agree with you @viva, finding a doctor familiar with MP is important. At least for a consultation. My recommendation is Dr. Darrell Pardi at the Mayo Clinic in Rochester Minnesota. This disease can turn your life upside down if you don’t see an “MP” qualified Doctor. I realize it may be a hardship to travel and see him and your insurance may not pay for it, but if there is any way you can, I would go online and set up an appointment. Dr. Pardi and his Associates are very qualified. He will be able to read your CT scan(s) and determine the best course of action. In my situation it was to do nothing. I had all the typical symptoms and they just got less severe over time. I had become asymptomatic. Had I not seen him my doctors would still be running multiple CT’s, blood test and who knows what. They didn’t have a clue. You can have the Mayo Clinic handle any procedures he orders or it may be possible He will advise your Provider (GP) and communicate with him or her how to best handle your case. There are important answers that are needed. I don’t want to go into that much detail but only someone like Dr. Pardi can determine how to interpret the information based on experience. At the very least you can try a remote consultation. Apply for the consultation, send your CT scans (on a Disk) and any other information to him for a reading. He would not be able to do a hands on exam but he may be able to direct your Doctor. I have not heard of anyone doing this but I don’t know why it would not be possible. I am not affiliated with the Clinic or Dr. Pardi in any way. I am just a satisfied MP Patient. I would be glad to assist anyone wishing to make the contact. Wishing you good health as always,   vdouglas

REPLY
viva | @viva | Nov 20, 2016
In reply to @viva "I too am early in my diagnosis. I am currently seeing a general practitioner and also..." + (show)
@viva

I too am early in my diagnosis. I am currently seeing a general practitioner and also a surgeon. Neither, from what I can tell are really familiar with MP. I have had two ct scans. The second was ordered by the surgeon. Since there was no signs of increase in size of the growths, we are on a wait and see mode with him. My GP has decided to get a second opinion. Waiting on the appt. I would suggest you attempt to find someone familiar with MP regardless to what letters are behind their name. That seems to be the challenge!

Jump to this post

hello, I’ve heard a lot about Dr. Pardi. Any contact information or other information will be appreciated ! I would hope my GP would contact him.Thank you.VivaPowered by Cricket Wireless.

REPLY
Jamie Olson | @jamienolson | Nov 20, 2016

@viva, here is a link to the Gastroenterology and Hepatology Department at Mayo Clinic in Rochester.
http://www.mayoclinic.org/departments-centers/gastroenterology-hepatology/doctors, here you will find great information on specialty groups, physicians and a link to request and Appointment.

Best of luck to you-

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