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

@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

Mine is edema and inflammation of the mesentery. I am having a lot of pain with this.

REPLY
@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

@denia,     I believe inflammation and edema are common and is what has put a lot of us in the ER in the beginning. If you have a lot of pain and bloating, certainly the inflammation and edema can cause that. If you can’t tough it out, ask your Doctor if you can start on an Anti-inflammatory medication. Your history must be reviewed. Some treatments can be worse for some than others depending what other underlying issues you have. A Diabetic, for example, may have a very tough time taking Prednisone. The benefit must outweigh the risk. As I have said before it is best to get a recommendation for treatment from an MP experienced Doctor, if possible. Also, if you have been told recently that you have inflammation of the mesentery, ask your Doctor for a CRP with your next blood work. C-Reactive Protein, it is an indicator for inflammation in the body. I think it is good to know your CRT and make a note how you feel at that level. Keep it in your records for comparison. Get a binder with slide in plastic inserts. Every blood test, get a copy, save everything and put it in you folder. Learn as much as you can and be very proactive and stay positive. Get well everyone@vdouglas

REPLY
@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 @upnorthnancy,           With Mesenteric Panniculitis the report may say (in a very mild case) “Abnormality of the fat surrounding the super mesenteric artery and vein”, “Mild hazy stranding within the central mesentery (pertaining to lymph nodes)”. The ER Doctor asked me if I had Cancer. That is what put me on a quest to resolve this issue. I guess I am thankful he asked that. It did change my life for sure. Best wishes,@vdouglas

REPLY
@bertbiz

I was diagnosed with MP May of this year. I understand you pain and fatigue. You are not complaining, you are stating how you feel. What kind of treatment have you gotten?

Jump to this post

@snoopdog,                Tonight I pray for you also

REPLY
@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

Hi @vdouglas, @upnorthnancy,
I was worried about cancer. My mother had Non-Hodgkin’s lymphoma and my father had Crohn’s disease. So when I was having pain, I certainly thought of that first. When I found out it was MP, it was a relief, one, because it had a name and two, because it wasn’t cancer. After taking prednisone and starting to feel better, I had my second CT scan and found out the lymph nodes had gotten considerably smaller and the mesentery wasn’t as hazy. But I did still ask the doctor if it was cancer, would they be able to see it and tell the difference between that and MP. She assured me they would be able to tell the difference, and she was glad I asked the questions. This is all really scary, painful and uncomfortable. I have been seeing a GI team at Park Nicollet in Minneapolis.

Roberta

REPLY
@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

@bertbiz, Glad to hear of your progress. Sounds like you had some great doctors. Lymphoma was my concern as well. I was also concerned about mesentery blood vessels and blood flow to the intestines. Dr. Pardi at the Rochester Mayo Clinic went over my CT with me pointing out all that I had prayed for. No Lymphoma, no blood restriction, mild and not progressing. Plus I have gradually become asymptomatic. It was a concern of mine as well, whether they be able to tell if I had lymphoma or cancer. What a relief that was. None of my Doctors at home would even look at my CT.@bertz, thank you for sharing and I wish you continued improvement.

REPLY
@bertbiz

I was diagnosed with MP May of this year. I understand you pain and fatigue. You are not complaining, you are stating how you feel. What kind of treatment have you gotten?

Jump to this post

Just a friendly reminder to everyone. It is safer to use the private message function of this website should you wish to share your personal email or phone number with a member.
Thanks,
Colleen

REPLY
@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

And I wish you the same.

REPLY

WOULD LIKE TO JOIN YOUR GROUP…DIAGNOSED WITH MP AUGUST 2015

REPLY

Hi @me2strain,
Welcome to Connect. I’m sorry about your diagnosis, but glad to know you are seeking help by joining this group. You may want to read through and join the active discussion taking place here on MP:
http://mayocl.in/2f6tIUi
@me2strain, could you tell us a bit more about yourself? What symptoms and frustrations are you experiencing?

REPLY

I went to see the gastro today. He did not like the fact the radiologist would suggest MP because of edema and inflammation in the mesentery. He would only do a colonoscopy and endoscopy. He did not want to address the inflammation and the pain I was having. He said he has treated 3 patients with MP, but we have to rule out a lot of things first. I am wondering if I should just get an appt with Mayo Clinic or go ahead and do the procedure. He didn’t seem at all empathetic to the pain and discomfort (and nausea that I have been having that is getting worse by the day.

REPLY

Hi @denia,
It can be frustrating when your healthcare provider may not seem empathetic to your symptoms. Seeking a second opinion is always a wise choice, and if you would like to make an appointment at Mayo Clinic, you can use the following link: http://mayocl.in/1mtmR63.
Did your doctor explain what all he needs to rule out before he can make a firm diagnosis of MP?

REPLY
@kanaazpereira

Hi @denia,
It can be frustrating when your healthcare provider may not seem empathetic to your symptoms. Seeking a second opinion is always a wise choice, and if you would like to make an appointment at Mayo Clinic, you can use the following link: http://mayocl.in/1mtmR63.
Did your doctor explain what all he needs to rule out before he can make a firm diagnosis of MP?

Jump to this post

I don’ t have a “like” button through my connection but I agree with the second opinion and Mayo appointment. With all due respect, was the doctor basing his decision on CT evidence and blood test results?Vdouglas

REPLY
@denia

I went to see the gastro today. He did not like the fact the radiologist would suggest MP because of edema and inflammation in the mesentery. He would only do a colonoscopy and endoscopy. He did not want to address the inflammation and the pain I was having. He said he has treated 3 patients with MP, but we have to rule out a lot of things first. I am wondering if I should just get an appt with Mayo Clinic or go ahead and do the procedure. He didn’t seem at all empathetic to the pain and discomfort (and nausea that I have been having that is getting worse by the day.

Jump to this post

@kanaazpereira and @vdouglas Beat me to it. It’s always great to get a second opinion. You have to have a doctor that is going to listen carefully and thoughtfully to what you are going through. If he/she doesn’t, time to find another doctor.

REPLY

Happy Thanksgiving to everyone! I sincerely hope that all is well today and that everyone is feeling great! Feeling blessed and happy to be with family and friends! May the Lord Bless you and keep you! May He shine his light upon you and give you peace. Now and forever more !!

Liked by jms7

REPLY
Please login or register to post a reply.