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

@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don’t know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don’t have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don’t know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

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Hi @dennisl27,

Yes, fatigue can be very debilitating! I’d like to invite you to check out this discussion (Autoimmune Diseases and Fatigue), here on Connect: http://mayocl.in/2hd6onk
Please feel free to post a message, join in the conversation, and tag other members for more information; I hope this helps.

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@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?

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I made an appt with a gastro that I used to see several years ago and found out that she is successfully treating a few patients with MP! She gave a 1 week decreasing dose pak for the prednisone then put me on Mobic for 30 days to see if that will relieve some of my symptoms. She thought the Mobic was easier on the body than the prednisone in the long run. She has several patients that are on this with reduced symptoms. Anyone have any experience with Mobic?

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@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?

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I have not been writing. Got sepsis from oral surgeon. Antibiotic reaction and will soon get cdiff from month on infusion therapy. Not good.

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@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?

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Thank you Denia! I had not heard of Mobic. But, I will discuss it with my GI at my appointment next week.

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@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don’t know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don’t have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don’t know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

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This site has helped a great deal!
Thanks for letting me know about it and the quick response.
Dennis

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

Hello @denia,

There are a few members on Connect who have used Mobic (meloxicam), although for different conditions. I’d like to introduce you to @nanke99, @rayrachel, @joshmeyers, @mohavegal, @alicea; I hope they can provide more insight.

@denia, have you experienced any side effects from Mobic, such as an upset tummy or indigestion?

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I had my GI appt yesterday and they have begun treatment with 30mgs of prednisone a day and to get back to them on Friday to tell them how I feel. Will I begin to see much improvement with the pain and fatigue? If anyone has any advice or information/suggestions I would appreciate it.. thank you

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I thought many of you would find the attached article interesting.
http://www.cnn.com/2017/01/04/health/new-organ-mesentery/

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I’ve been following this. Finally, some proof! This will help to diagnose people.

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@dennisl27

I thought many of you would find the attached article interesting.
http://www.cnn.com/2017/01/04/health/new-organ-mesentery/

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How are things going for you if you don’t mind me asking?

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I am also interested in auto immune have PBC .I have had some formal med Ed. Why don’t they treat auto immune diseases like AIDS which is. Acquired Immune Diffentcy? Same thing body. Attacking itself? Don’t know much about aids makes you wonder?

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