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

@kimh

Is this group still active?

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Thank-you Von! I am going to print it out to go over it with a fine tooth comb! ( a little old school, I know!) I am so glad to have joined this group!

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It’s so difficult when you have a rare disease, but being in a Northern community might be a complication if there is a lack of specialty doctors. I’m in southern Ontario, so I have met some doctors who have heard of or know patients with MP. I will be going to a gastroenterologist who had previously treated me for esophageal spasms (2014-2016). He seemed very well read and was open to listening me when I would share my experiences or symptoms. Most impressive to me, was his thoroughness. I hope it will be a similar experience now that the concentration will be on MP. I will keep you updated, though it would be a long distance for you to travel, unfortunately.

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@kanaazpereira

Hi @kimh,

Since you will be seeing your doctor soon, and while we wait for other members to share their insights, I thought you might wish to read this information about Mayo Clinic’s approach with regard to MP:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090

Some of the drugs listed in the above information are tumor necrosis factor (TNF) blockers – they reduce the effects of a substance in the body that can cause inflammation. May I ask if you or your doctors have considered these?

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Hi Kanaaz,
Thanks for the link!

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@kimh

Is this group still active?

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Thanks for your post I felt so much better after reading it! I have MP and it is a daily struggle!

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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@kimh I agree with you.I do need a specialist. I have had so many years of being treated like a freak show I am more than willing to avoid blood draws,surgeries, and the questions.More like statements,” you’re so young” . I am a fourty year old with at 60 year old body.What more can you say.

I have bills.Then I am heading back into the loop again.

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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I agree. Anything that I have read seems to indicate that this is a disease that is more prevalent among elderly patients. I was diagnosed at 49, but because I had a hysterectomy at 40, it may be possible that my internal age is much older. Like you, I kept getting the ‘you’re too young to have MP’. Well it’s nice to be a little extraordinary????

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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Interesting-Doctors suggested I have had this since I was around 8 possibly when I experienced some internal trama and got extremely cold as well. Ever since getting very cold has brought on an immediate gut reaction. Any kind of stress is not good for me. Autoimmune issues are a bit extreme in my family as well. How about others?- – –

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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Thank you 🙂 You are very generous Von, you made my night.
I wish you all were next door so we could support each other in person. These doctors don’t have the experience to make most of us feel comfortable. So we got to do it eh? Last thing we need to do is feel like a alien…

Man take care of yourself Von. This cold and flu stuff is no joke. Have someone got get you a elderberry syrup , cuz the last thing you need to be doing is coughing with this condition.

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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I tend to think trauma for me. I was hit head on by a drunk driver about a decade ago. It is a unwanted gift that just keeps on giving. I was smashed from behind by a unbelted passenger into steering column. But I think it was seat belt and air bag that saved me and finished my gut off.

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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@poppy73 ,Thank you very much for the kind words and the advice. Cough is gone full steam recovery mode.
Thank you,
Von

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Thank you @vdouglas! Very kind words! All of these posts help me to get and keep perspective on this crazy MP. Just feeling I am not alone anymore-worth tons of positive regard. I sure find lots of rest is the #1 key for me. Never easy but more so as I age, rest-as a state of mind as much as a physical state is imperative. I really have few evenings that include “plans”. Plans more then feet up and in some comatose state! I have 4 children and 14 grand children and a husband who will never retire but with that in mind—rest is still my first key! A positive, productive, creative state of mind -all good! Having no Doctor I must be my own manager as much as possible, at this point.

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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Well, I had a severe fall on black ice (another reason to hate winter!) and several abdominal surgeries which may be a factor as well. I also have hypothyroidism. In this instance, I had been under a lot of stress, some of it good stress, but also a very big upset. My mother has ITP and hypothyroidism, so there is evidence of autoimmune disease in my family as well.

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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Wow! I’m glad that you survived such a horrific accident, but you are so right about that unwanted gift. How can trauma cause an autoimmune disease? Do our bodies still feel ill from the trauma? So many people have back and/or abdominal traumas, why do only a few of us develop an autoimmune disease from it?

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@pcfromfm , Thank you. Even though this disease cannot be cured it can be lived with and you show us that. We each find our own way of coping and as we share it with others we are each able to add something else to our “coping bag of tricks”.Some have terrible struggles and my heart just breaks for them because I have felt the pain, bloating, nausea etc. but generally it can be manageable as the “study 92 patients” shows us.
Again, positive minded people like you are a great inspiration for those that suffer so terribly and for each and every one of us.
Regarding your mention of family, I think a husband that will never retire is such a rare virtue in today’s world, you are very lucky. 14 grand children really shows that life has a great purpose.
Best wishes,
@vdouglas
Von

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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Not sure if there is connection between trauma and autoimmune. The doctors I had that diagnosed me suggested that either might be reason I have it. But that there is no definite cause as yet for those who have the disease or it’s progressions. Not sure if that’s changed. MS runs in my Dads family with three that I know of (it has shown up a bit later in life for all of them so far) and my Mother also had Hypothyroidism and some undiagnosed issues. My brother has some mayor health concerns but no diagnoses. So the guessing continues and I watch the younger ones in the family closely. Keep smiling, keep moving= my moto! But I sure hate to use Predisone. Maybe I have had to for too long and to many times, not sure. Side effects not good although it does seem to make a difference. So R and R as much as possible for me. Anyone else find something besides these drugs that definitely help?

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