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Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

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

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kimh | @kimh | Mar 12, 2019

Yes, there are a couple of theories. One is abdominal surgeries (I have had a few!), severe back trauma (2 weeks before I presented with symptoms, I had a horrific fall on black ice!), or in some people there is an underlying condition (such as lymphoma). Mine is a direct result of the fall. I have had my markers checked and do not (thankfully!) have lymphoma. I'm not sure if there are any other connections with this disease.

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robinbeth6 | @robinbeth6 | Mar 12, 2019
In reply to @kimh "Yes, there are a couple of theories. One is abdominal surgeries (I have had a few!),..." + (show)
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Yes, there are a couple of theories. One is abdominal surgeries (I have had a few!), severe back trauma (2 weeks before I presented with symptoms, I had a horrific fall on black ice!), or in some people there is an underlying condition (such as lymphoma). Mine is a direct result of the fall. I have had my markers checked and do not (thankfully!) have lymphoma. I'm not sure if there are any other connections with this disease.

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Not an auto imune disease?

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robinbeth6 | @robinbeth6 | Mar 12, 2019
In reply to @robinbeth6 "Not an auto imune disease?" + (show)
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Not an auto imune disease?

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I also had a hysterectomy but 5 years ago

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robinbeth6 | @robinbeth6 | Mar 12, 2019
In reply to @dementorshoes "Oh, Robin, bless your heart. I'm right there with you. In fact, you described the pain..." + (show)
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Oh, Robin, bless your heart. I'm right there with you. In fact, you described the pain perfectly. I was saying it was like an unbelievably painful hug. Or comparing it to back labor. Anyway you describe it, it's legitimately, the worst pain I've ever experienced (and I've had my share). Mine has been going on for 6 weeks now and I've become used to some of it, but there are times it takes me to tears. I actually am currently sporting a black eye from falling after the pain caught me. I was trying to stand when the pain took me to me knees and I briefly fainted, and down I went (I've fabricated a much more entertaining story involving ninjas and a top secret mission). I so hope you get good medical help and find some relief.

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Thank you
This just came from nowhere!

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kimh | @kimh | Mar 12, 2019
In reply to @robinbeth6 "Not an auto imune disease?" + (show)
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Not an auto imune disease?

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Yes, it seems to be classified as autoimmune. One of my medications (azathioprine) is an immuno suppressant

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kimh | @kimh | Mar 12, 2019
In reply to @robinbeth6 "I also had a hysterectomy but 5 years ago" + (show)
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I also had a hysterectomy but 5 years ago

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That could be a connection

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kimh | @kimh | Mar 12, 2019
In reply to @robinbeth6 "Thank you This just came from nowhere!" + (show)
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Thank you
This just came from nowhere!

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I hope this helps. But really, you need a good GI who either has experience or who is willing to research and learn. I have been pretty happy with mine, though there have been some frustrating times for sure. I am his only patient with MP

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robinbeth6 | @robinbeth6 | Mar 12, 2019
In reply to @kimh "I hope this helps. But really, you need a good GI who either has experience or..." + (show)
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I hope this helps. But really, you need a good GI who either has experience or who is willing to research and learn. I have been pretty happy with mine, though there have been some frustrating times for sure. I am his only patient with MP

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Where are you located?

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