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

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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@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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Morning @jarnold246-welcome to our group. I’m unsure what “body type” he is referring to and how that can change what was on a CT-? I’ve been diagnosed for many years now and have had a few remissions. But can relapse at anytime. Are you on medication(s)-I May have missed your previous discussions. Are you on a special diet? What symptoms do you usually have? I have found on a day-to-day basis that if I watch my diet, get extra rest and keep stress low, then I am able to enjoy life without extreme medications I need in a flare up. I hope you get help❤️

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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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I'm sorry, but I have never heard that you should be a certain body type for this disease! What? I have heard that it is more typical for men in their 60's, but since I am a female who was diagnosed at 49, I guess there are many theories out there as to who can have MP.

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@kimh

I'm sorry, but I have never heard that you should be a certain body type for this disease! What? I have heard that it is more typical for men in their 60's, but since I am a female who was diagnosed at 49, I guess there are many theories out there as to who can have MP.

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Point well taken, @kimh and @pcfromfm. When I read the comment, "I was diagnosed with MP last summer via CT but the gi doc I went to said no I don't have the body type for it and looked at the ct and said no he didn't see it." I felt confused as well.

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Yes, I kind of feel that either you have it or your don't depending on the results of the image. Maybe a better question would be, have you recently had a severe back trauma or abdominal surgery? My GI has said that there is a correlation between these events and MP. For me, I had a bad fall on my back two weeks prior to experiencing my first symptoms of MP.

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@hopeful33250

Point well taken, @kimh and @pcfromfm. When I read the comment, "I was diagnosed with MP last summer via CT but the gi doc I went to said no I don't have the body type for it and looked at the ct and said no he didn't see it." I felt confused as well.

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He pretty much said that because I wasn't over weight that I couldn't have it. I had bariatric surgery in November of 17 and then my gallbladder out on March of 18 then the pain started in July of 18. I had a reread of my CT done and the doc who read it said yeh it's there (meaning the MP) but I would not have called it out on the imaging. It wasn't significant enough I'm assuming. I have read almost all there is to read about it it hink and feel like if the docs at mayo cant figure put what this is, MP or not, then maybe I am just crazy.

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@jarnold246

He pretty much said that because I wasn't over weight that I couldn't have it. I had bariatric surgery in November of 17 and then my gallbladder out on March of 18 then the pain started in July of 18. I had a reread of my CT done and the doc who read it said yeh it's there (meaning the MP) but I would not have called it out on the imaging. It wasn't significant enough I'm assuming. I have read almost all there is to read about it it hink and feel like if the docs at mayo cant figure put what this is, MP or not, then maybe I am just crazy.

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@jarnold246 You have been through a lot. I hope you get the answers you need and begin to feel better at least. Many of us on Connect have had hard-to-diagnose health problems and have spent years trying to get an answer. When you finally get the answer it feels so good. Hang in there!

Liked by kimh, jarnold246

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@kimh

Yes, I kind of feel that either you have it or your don't depending on the results of the image. Maybe a better question would be, have you recently had a severe back trauma or abdominal surgery? My GI has said that there is a correlation between these events and MP. For me, I had a bad fall on my back two weeks prior to experiencing my first symptoms of MP.

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Morning all! Doctors agreed when I was diagnosed that I probably have had this since I was young. I had hypothermia as a young person and developed terrible gut issues after that. In and out of hospital at least 3 times a year. But auto immune diseases run in my family like crazy as well. I’m old now -turn 70 this year!-and I’ve learned to live a pretty full life with it, juggling factors that effect quality. But you are sure correct kimh- being diagnosed and knowing some of what this disease is all about – very comforting. Doctors kept telling me for years that if I would only leave a less stressful life I would be fine, if I stopped doing such and such then -. Took many years to end up finding out that it wasn’t in my head! 😊

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@pcfromfm

Morning all! Doctors agreed when I was diagnosed that I probably have had this since I was young. I had hypothermia as a young person and developed terrible gut issues after that. In and out of hospital at least 3 times a year. But auto immune diseases run in my family like crazy as well. I’m old now -turn 70 this year!-and I’ve learned to live a pretty full life with it, juggling factors that effect quality. But you are sure correct kimh- being diagnosed and knowing some of what this disease is all about – very comforting. Doctors kept telling me for years that if I would only leave a less stressful life I would be fine, if I stopped doing such and such then -. Took many years to end up finding out that it wasn’t in my head! 😊

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Glad to hear that you found an answer, @pcfromfm! It feels good when you get to the right doctor who is willing to look with you for an answer.

Liked by PCfromFM

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These posts leave me to realize it’s possible for MP
To return probably even these three years post cancer surgery. It’s touch and go day by day. Current diagnosis is IBS. Thanks for all of your posts.

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@jarnold246

He pretty much said that because I wasn't over weight that I couldn't have it. I had bariatric surgery in November of 17 and then my gallbladder out on March of 18 then the pain started in July of 18. I had a reread of my CT done and the doc who read it said yeh it's there (meaning the MP) but I would not have called it out on the imaging. It wasn't significant enough I'm assuming. I have read almost all there is to read about it it hink and feel like if the docs at mayo cant figure put what this is, MP or not, then maybe I am just crazy.

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You're not crazy, but there is a correlation with abdominal surgeries. I have also had a few, but my MP symptoms began two weeks after a nasty fall on black ice, where I landed on my back.

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