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

Interested in more discussions like this? Go to the Digestive Health Support Group.

Pycnogenol with a R by the name, Berbine. and Bromelain for the gut and other issues. AHCC shark liver sold by Life Extention, Country Life and ImmPower sold buy Harmony Company for immune health. Look on Amazon or a health food store. "The Truth" Dr. Fred Pescatore

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Hi, at Mayo Clinic, they expected to find lymphoma but admit they are sometimes surprised as in my case which turned out to be a rare cancer called Carcinoid, a neuroendocrine disease.

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@dementorshoes

Hey everyone. Hoping y'all are all doing well, or at the very least, hanging in there. Another 2 hospital stays under my belt, but can only partially blame MP, at least I think. Important questions to ask everyone. Has anyone else had an issue with malabsorption? Thanks to the constant nausea, which I try to control by grazing (simply snacking throughout the day instead of 3 full meals and really helps) as opposed to taking meds for it, my appetite is rarely there. Some weight loss and bowel movement issues (stools ranging from watery diarrhea to an oily sludge) are common symptoms. My other question, about that which could possibly be related to the malabsorption, is about fainting or blacking out. Anyone else experiencing anything like this? I've had 3 'episodes' of this occurring with an awesome little laundry list of injuries (a concussion, 2 fractured vertebrae, bruised sternum and ribs, and a spectacular black eye, divided up between the 3 'episodes') to draw the doctors' attention away from MP for a bit and focus it on something they can confidently treat, and actually spell. Y'all might even think I'm making it up, as pitifully gloomy as it will sound, but 2nd fall's MRI confirming concussion and checking for any neck injuries, discovered a brain aneurysm. I wish it were just the plot of a sad Lifetime network movie, but it's true. The aneurysm is large enough to be operable, but one who's dimensions won't be easy to fix with a routine clip or coil (because, like MP, I like the complicated, rare shit). All this added fun, and I insist that MP deserves the focus and I beg for it to be addressed first, assuring the doctors that the abdominal pain from it wins out over everything else. So, a novel later (apologies), I'm hoping y'all can help with any similarities you may have experienced with these 'episodes', and malabsorption. Thanks.

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I too pass out. Currently at heart doctor. Everything looks good on his end. Will probably get a device inserted into my chest to monitor it at all times, to see what goes on when I pass out. I have no warning that it is going to happen either, just wake up on the ground in pain

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Does anyone know of any ny doctors who can treat this?

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I finally took my situation into my own hands and decided to reach out to Mayo to try to get in to see a GI doc there. I have an appointment in late Oct. I am looking for any advice about what to expect. I do not know what doc I will see yet, but am in the process of getting my imaging and notes from my GI doc here to bring with me. I would appreciate any and all advice. Thanks in advance!

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Hello @jarnold246

Congratulations on advocating for yourself and also for getting an appointment at Mayo. You were asking about what to expect during your appointment. I would like to introduce you to some Members of Connect who do visit Mayo for their treatment. Please meet @jenniferhunter, @windwalker and @johnbishop, just to name a few.

Here is a link from Mayo's website with some more information about visiting Mayo Clinic, https://www.mayoclinic.org/patient-visitor-guide

Also, here is a link to a Mayo Connect discussion group where folks who have been to Mayo talk about their experiences, https://connect.mayoclinic.org/discussion/need-patients-experience-with-mayo-clinic-is-it-worth-it/

@jarnold246, will you be traveling a distance to get to your Mayo appointment?

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@hopeful33250

Hello @jarnold246

Congratulations on advocating for yourself and also for getting an appointment at Mayo. You were asking about what to expect during your appointment. I would like to introduce you to some Members of Connect who do visit Mayo for their treatment. Please meet @jenniferhunter, @windwalker and @johnbishop, just to name a few.

Here is a link from Mayo's website with some more information about visiting Mayo Clinic, https://www.mayoclinic.org/patient-visitor-guide

Also, here is a link to a Mayo Connect discussion group where folks who have been to Mayo talk about their experiences, https://connect.mayoclinic.org/discussion/need-patients-experience-with-mayo-clinic-is-it-worth-it/

@jarnold246, will you be traveling a distance to get to your Mayo appointment?

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Thank you! I am traveling from St Louis MO. I actually work for a highly ranked academic facility which is why this is so frustrating for me that they can "figure out" what's going on. I was diagnosed with MP last summer via CT but the gi doc I went to said no I dont have the body type for it and looked at the ct and said no he didnt see it. I'm beyond frustrated and really need answers as this is affecting my life. Again thank you and I appreciate any insight!

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@jarnold246

Thank you! I am traveling from St Louis MO. I actually work for a highly ranked academic facility which is why this is so frustrating for me that they can "figure out" what's going on. I was diagnosed with MP last summer via CT but the gi doc I went to said no I dont have the body type for it and looked at the ct and said no he didnt see it. I'm beyond frustrated and really need answers as this is affecting my life. Again thank you and I appreciate any insight!

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@jarnold246 Wishing you well and hope that you find answers! Will you post again?

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@jarnold246

Thanks to @johnbishop and his great memory for discussions, here is a Connect discussion group devoted to visiting a Mayo facility, https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

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