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

@danielcamp

Hello,
I was diagnosed last year with Schlerosing Mesenteritis as they see scarring on the CT scan. However I have yet to had a biopsy for it nor have I been treated. I was 39 when this started and now I am 42. In that time I have gone two four different cities and seen several doctors and surgeons, all of which have claimed I have this rare illness but no one will seem to take the steps needed to help. As of last year I went from a size 36 to a size 60 in my waist, that now is as hard as hitting bone I am sleeping most of the day and still tired, I have a low grade fever that I can not get rid of and now as of last week I have jet black poop. I have been trying to get the healthcare I need for sometime and wanted to know is there anything else I can do. Any advice would be helpful.

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Thanks sadly I have gone to the er several times for pain because of it. They consider it gas, heart burn or something else. I know my blood pressure is not 174/114 because of it and I may have no choice as I was supposed to see a surgeon about it next week only for the head surgeon that I saw last year changed my appointment to where I have to see him now. Either way thank you, I am already preparing to see about the Mayo clinic if this does not work.

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Hello @danielcamp,

I see that @vdouglas has shared some great insight with you; I also wanted to welcome you to Connect, and let you know how glad we are to that you’ve come to our community for support.

I hope @billymac65 @danrofohio @bhamilton @mardellepoff @billindc @bertbiz @viva @vmc123 @jimmymac @miker46 @mommasaid @sue62 @doron @eddieg @tlw32 @peterhamilton @gmeg will also jump in to give you more information.

Might I also suggest that you call Mayo Clinic? If you call the number on this Request an Appointment webpage, http://mayocl.in/2bkIbZy they will ask questions to help direct you to the best specialist. If you would like to make an appointment at Mayo Clinic you can call or request an appointment online here: http://mayocl.in/1mtmR63

I realize that this must be so stressful, and that you’re doing all that you can; I would encourage you to read through past messages in this group, feel free to tag members, and remember that we are here to help.

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I will highly recommend Mayo Clinic since they are research oriented and know how to properly diagnose the problem. In my discovery proper foods is the best healer but too many years of not knowing how to eat properly plus stress puts us in a special health situation. Please learn diet and eating proper foods for your future healing. Black stool to me usually comes from internal bleeding but not always. You should be in an emergency situation since pain can mean infection also. Since a year and a half ago by changing my diet healed many diseases including diabetes and Crohn’s. My acid stomach and reflux stopped after 50 years that was worth eating right. Good luck to you.

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@danielcamp

Hello,
I was diagnosed last year with Schlerosing Mesenteritis as they see scarring on the CT scan. However I have yet to had a biopsy for it nor have I been treated. I was 39 when this started and now I am 42. In that time I have gone two four different cities and seen several doctors and surgeons, all of which have claimed I have this rare illness but no one will seem to take the steps needed to help. As of last year I went from a size 36 to a size 60 in my waist, that now is as hard as hitting bone I am sleeping most of the day and still tired, I have a low grade fever that I can not get rid of and now as of last week I have jet black poop. I have been trying to get the healthcare I need for sometime and wanted to know is there anything else I can do. Any advice would be helpful.

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Hi, i dont know anything about your disease. But i think you should call your dr or e.r. about your black stools asap. I have heard thats not a good sign.

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@danielcamp

Hello,
I was diagnosed last year with Schlerosing Mesenteritis as they see scarring on the CT scan. However I have yet to had a biopsy for it nor have I been treated. I was 39 when this started and now I am 42. In that time I have gone two four different cities and seen several doctors and surgeons, all of which have claimed I have this rare illness but no one will seem to take the steps needed to help. As of last year I went from a size 36 to a size 60 in my waist, that now is as hard as hitting bone I am sleeping most of the day and still tired, I have a low grade fever that I can not get rid of and now as of last week I have jet black poop. I have been trying to get the healthcare I need for sometime and wanted to know is there anything else I can do. Any advice would be helpful.

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Glad to hear you are ready to see the Clinic. @kanaazpereia gave information on how to contact the Mayo Clinic. They are very nice and easy to deal with. Not at all like a normal clinic that has no time or patience. I highly recommend you call. Let us know how you are doing from time to time. It is normal to feel overwhelmed because you have an illness you want to ignore but can’t, you are in pain and can’t make it stop. You are hearing scary information. Just take one step forward at a time

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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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HelloThank you for the great advice! I am currently still on short term disability. I actually had surgery this week. I had a heart catherization since my calcium score came back very high. They did not find any blockages or anything that would prevent me from having this abdominal mass removed on the 15th (2weeks). With lots of prayers and friends like you to keep me going I am going to be OK. I will keep you updated. Dennis

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I was diagnosed with interstitial lung fibrosis after cat scan so does anyone know of this disease?? Read it is rare only 200,000 cases a year in U.S. I feel it was caused by my gerd which I have had for years, although I have taken meds for it also have gastritis which I can’t seem to get rid of.

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I have to ask with having sclerosing mesenteritis, don’t you need a biopsy to confirm that is what you have, not to mention what stage it is in? Also is it normal for people with this to constantly be tired. Most days I can barely do anything and when I do have energy, its to the point that just washing dishes for 10 minutes is enough for me to have to go lay back down. Not to mention I have had swollen lymph nodes in the base of the mesentery as well as in my chest, arm pit and groin. Is all this normal for that disease?

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Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

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@vdouglas

Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

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If you are talking to me it was already checked. Black stool is not from food, or medicine taken.

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@vdouglas

Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

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Hello @danielcamp, Nope the comment was not meant for you specifically, Sorry, it was meant for everyone. I am speaking from experience and made the comment because there are a lot of sore tummy’s out there reading these posts and possibly some taking Pepto Bismol/Bismuth on occasion. I didn’t want them freaking out thinking they had internal bleeding, we have enough problems.

How are you doing? any progress with the doctors?

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@vdouglas

Just want to make a note that although black stool is a symptom of bleeding, and should not be taken lightly as stated in two posts.
It should be noted, before you panic, that it could also be something simple. Maybe something you have eaten, or if taking Pepto Bismol or Bismuth, that will very likely give you black stool.

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Its ok, just making sure cause I did not want to seem rude and not answer your question. As for everything, just the usual tired and my chest is hurting more, out of breathe a lot. But I am seeing a surgeon Wednesday, so here is hoping he does what is needed. I really need to start getting treated for whatever it is.

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