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

@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?

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Ops em come out wrong. Lisa

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@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!

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What shows up on the ct scan?Nancy Shermoen~

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@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!

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Inflammation. In my case, inflammation of the lymph nodes near the mesentery.

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@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!

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

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@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!

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@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

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@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!

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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

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@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?

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@snoopdog,                Tonight I pray for you also

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@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!

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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

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@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!

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@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.

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@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?

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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

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@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!

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And I wish you the same.

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

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