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

Hi @robinbeth6 , Have you had a CT scan? Many have been diagnosed that way. I also had a surgical biopsy done. I don't remember blood work being used to diagnose MP. Maybe your doctor is trying to rule out other things?

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@kimh

Hi @robinbeth6 , Have you had a CT scan? Many have been diagnosed that way. I also had a surgical biopsy done. I don't remember blood work being used to diagnose MP. Maybe your doctor is trying to rule out other things?

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My Ct scan said there is evidence so he wasnt convinced..Im not sure why.But ive been in crazy pain for a week.

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I'm not sure why either. Have you discussed surgical biopsy at all? Also, has the doctor prescribed anything for the pain?

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@dementorshoes

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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I'm not sure this Doctor is great!!I don't think he's so familiar with this Disease.How often do you get flair ups?What type of diet are you on?
Can this mimic Collitis?
Thanks so much!!

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@kimh

I'm not sure why either. Have you discussed surgical biopsy at all? Also, has the doctor prescribed anything for the pain?

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I really only saw this Dr.For lack of anyone else.And he said he wants to wait for the bloods.Last night i would have gone to the hospital..

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@robinbeth6

I really only saw this Dr.For lack of anyone else.And he said he wants to wait for the bloods.Last night i would have gone to the hospital..

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Do you know of a Dr.In New york or vicinity?

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@robinbeth6

My Ct scan said there is evidence so he wasnt convinced..Im not sure why.But ive been in crazy pain for a week.

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Blood work won't reveal anything relevant to MP, I don't believe. Only imaging. I've had 2 CT scans, 2 MRI s, and an MRCP. Oh, and some new fangled ultrasound of the pancreas that's done via endoscopy. The MP mass waa evident on all of them, and unchanged after 6 weeks of meds. Is this a PCP or a GI?

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@robinbeth6

Do you know of a Dr.In New york or vicinity?

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I'm from Canada, so I can't help with a doctor. I am under the care of a GI and my family doctor. My GI has taken over the treatment plan (Prednisone, Tamoxifen, and Azathioprine) and my family doctor has been taking care of my pain (in the oxy family). They communicate regularly. At the end of this month, I will be 'celebrating' my fifth year with this disease. I had been in remission for two years, but have been battling a flare up since August 2017. Diet doesn't seem to bother me (I am pretty health conscious to start with), but stress and the weather seem to be playing a role. I have had several relapses while trying to wean off of the Prednisone. We are hoping that we have the right cocktail now! I hope this helps you…

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@robinbeth6

I really only saw this Dr.For lack of anyone else.And he said he wants to wait for the bloods.Last night i would have gone to the hospital..

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Actually, the hospital might have helped with pain management and ordering a ct scan.

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@robinbeth6

I really only saw this Dr.For lack of anyone else.And he said he wants to wait for the bloods.Last night i would have gone to the hospital..

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Robin, go to the ER. Go. Any decent ER doc will order another CT scan and certainly help get your pain under control. I've been hospitalized 4 times with MP. You probably know more about MP from Google than your doctor. It's a sad truth. You need a good GI who either has legitimate experience (which is not very likely) or whose ego won't prevent them from referring you to Mayo or a good teaching hospital near you. Fight for yourself. Be your own advocate. Go to the ER, hon.

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@kimh

I'm from Canada, so I can't help with a doctor. I am under the care of a GI and my family doctor. My GI has taken over the treatment plan (Prednisone, Tamoxifen, and Azathioprine) and my family doctor has been taking care of my pain (in the oxy family). They communicate regularly. At the end of this month, I will be 'celebrating' my fifth year with this disease. I had been in remission for two years, but have been battling a flare up since August 2017. Diet doesn't seem to bother me (I am pretty health conscious to start with), but stress and the weather seem to be playing a role. I have had several relapses while trying to wean off of the Prednisone. We are hoping that we have the right cocktail now! I hope this helps you…

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Thank you
Feel good

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@dementorshoes

Robin, go to the ER. Go. Any decent ER doc will order another CT scan and certainly help get your pain under control. I've been hospitalized 4 times with MP. You probably know more about MP from Google than your doctor. It's a sad truth. You need a good GI who either has legitimate experience (which is not very likely) or whose ego won't prevent them from referring you to Mayo or a good teaching hospital near you. Fight for yourself. Be your own advocate. Go to the ER, hon.

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What did they give you in the Er?

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