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.

@pcfromfm

Morning! I’m in Canada and take extra strength Gravol as soon as I start to feel nauseous st all. It’s hardly strong enough. I’m not good with most pain meds. Can’t take morphine/Percocet/oxy so I’m still just using teva-lenoltec#3.
I can’t eat processed foods, no alcohol, (😟) no corn or onions in any form(powder, sugars etc) no strong spices, no chemicals or artificials in drinks or foods, only small meals, less meat, no milk, very little red meat, life is pretty plain! Lol! I seem to have no problems with most grains or cane sugar. Everything else (just about) in moderation. Stress of any kind ( I had a very stressful profession and now I’m retired-what a difference-even though I loved it!) I require much more downtime than others, not sleeping so much but quiet time. Staying positive and happy sure helps! Have you found some triggers?

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Hi , Thanks for replying back , am from Canada to 🙂 Windsor, Ontario, still waiting getting transferring to GI you know how take long time to get in , am down size my food to because bloating and sharp pain attack with uncomfortable in my right side , hopefully one day there is treatment for MP 🙂

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@smezaael

Hi , Thanks for replying back , am from Canada to 🙂 Windsor, Ontario, still waiting getting transferring to GI you know how take long time to get in , am down size my food to because bloating and sharp pain attack with uncomfortable in my right side , hopefully one day there is treatment for MP 🙂

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Northern AB-but my specialist doesn’t believe there is such a disease! Lol-not much help! Diagnosed at University Hospital. Visited many when in a flare-up. Lol! Good luck finding a knowledgeable helpful Doc.

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Hi – just joined the discussion today. My symptoms seem to have started with back pain in the soft tissue/flank area. Last spring I saw a doctor who took things seriously – did lots of lab work, CT scan etc to make sure all organs were working OK. In the CT scan they spotted the MP. She put me on a 10 day course of pred. and then had a 2nd CT scan that showed no changes. From there she was lost. The back pain has come and gone but it was different than any other type of back issue I've had before. She referred me to a GI doctor and I haven't seen her yet – talk about 6 months to get an appointment. So 3 weeks ago I started having sharp pains in my lower right abdomen – too high for appendix and too low for kidney. BEsides, all the lab work and CT scans showed no issues with those organs. It seems to flare up with the back pain and I'm wondering if that back pain has been a symptom of MP all along. I don't seem to have any food issues yet but the pain is intense so I have been taking tylenol or advil but I don't like taking any of those for very long. It's very depressing have this much chronic pain and I'm not sure what my next move should be. My GI appointment isn't until NOvember! I'm glad to have found this site to at least see what others are doing to deal with this.

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I was diagnosed 2 yrs ago also discovered thru a CAT scan looking gir something else. Only
Thing I have is every morning when I wake up anytime between 3- 6 I have this pain real low in my stomach kind of across the bottom starting on the right front. I massage along, get up and walk, have a bit of gas, have a bowel movement, goes away and do same thing next day. I have this every morning for a couple of years. No doctor knows why! Is it MP symptom or not? 🤷🏻‍♀️

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@praggs

Hi – just joined the discussion today. My symptoms seem to have started with back pain in the soft tissue/flank area. Last spring I saw a doctor who took things seriously – did lots of lab work, CT scan etc to make sure all organs were working OK. In the CT scan they spotted the MP. She put me on a 10 day course of pred. and then had a 2nd CT scan that showed no changes. From there she was lost. The back pain has come and gone but it was different than any other type of back issue I've had before. She referred me to a GI doctor and I haven't seen her yet – talk about 6 months to get an appointment. So 3 weeks ago I started having sharp pains in my lower right abdomen – too high for appendix and too low for kidney. BEsides, all the lab work and CT scans showed no issues with those organs. It seems to flare up with the back pain and I'm wondering if that back pain has been a symptom of MP all along. I don't seem to have any food issues yet but the pain is intense so I have been taking tylenol or advil but I don't like taking any of those for very long. It's very depressing have this much chronic pain and I'm not sure what my next move should be. My GI appointment isn't until NOvember! I'm glad to have found this site to at least see what others are doing to deal with this.

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Hi,
I was also diagnosed with MP early this year from a ct scan. It has really been a learning experience. I also have lower back pain and been to my primary twice thinking that it was a kidney infection. Both times everything came back normal. I was also having the pain on my left side mid way of my abdomen below my ribs. Very intense at times that I have to take pain meds. I have these knots under my skin that runs towards my navel. If I do to much they tend to get worse and the pain gets worse. So, I am real careful about how much activity I do and what I do. I had a colonoscopy and the light down my throat. The only thing that was found at that time was diverticulosis. I go from diarrhea to constipation all the time. It’s so hard to find a Dr. Who knows how to help you. It gets really depressing at times because it seems to be a constant struggle. You have to stay strong. I get up everyday and work. I may have to go home or stay home, but I try to continue on with as much normalcy as I can. Hope this helps some.

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Facebook has mesenteric panniculitis group you can join.
Helpful to hear other people's journey and how they are dealing with this rare disease

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Morning Shaw896. I’m sure there are good reasons for not doing Facebook but the two groups are really worth the time. Only place I’ve found out so much about MP and been able to share and compare. People from all over the world are on and I hope you will join us❤️

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I was wondering if it were reasonable to request a PET scan before a biopsy? I have read that it can be caused or exacerbated by surgical procedures.
We are in the early stages of diagnosis after a positive CT.
A PET scan seems significantly less invasive!

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@garvin7117 are you seeing an MP specialist? That is the best person to provide advice on this. Each case is different. My specialist feels a biopsy for me is not necessary at this time, but each case is considered on its own merit.

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Unfortunately most doctors do not have experience with MP & from my understanding only 2 specialists in US at Minn Mayo who are not accepting new patients. I have a team of dr's on my case – grateful … but I do not want to take unnecessary meds to be a test subject at this point. Between the uncertainty, pain and stress it can be overwhelming.

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