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

Yes, there are a couple of theories. One is abdominal surgeries (I have had a few!), severe back trauma (2 weeks before I presented with symptoms, I had a horrific fall on black ice!), or in some people there is an underlying condition (such as lymphoma). Mine is a direct result of the fall. I have had my markers checked and do not (thankfully!) have lymphoma. I'm not sure if there are any other connections with this disease.

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Kim, the similarities between our cases is glaring. In my own research, I'd come to the conclusion that my MP comes from abdominal surgeries. In my lifetime, I've had 2 C-sections, hystectomy, oopherectomy, gall bladder, EVAR (after a AAA), and 3 hematoma evacuations. The last 4 of which were just last year. Though no doctor bothered to make the correlation, I did. I am big on blame. But, after reading your comments, I have to wonder about my back's role in this. January of 2017, I had emergency surgery on my back because I had developed Cause Equina Syndrome, also rare. Apparently, I like to get the rarest problems. Although, with MP, I just look like an overachiever. 🙂 I'm interested to hear more about your back, when and if you don't mind, hon.

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Hello @dementorshoes ! Yes, I have also had hysterectomy, oopherectomy and gall bladder surgery; not to mention surgical biopsy for diagnosis for MP! But, to be honest, I never felt that I had a problem with MP until two weeks after a nasty slip and fall on black ice (March 19, 2014….close to 5 year anniversary!!!). Two weeks to the day of the fall, I began experiencing symptoms, which my husband and the local clinic suspected that perhaps I had kidney stones that may have been shattered from the fall. The next morning, I was called back in to the clinic for an ultrasound and that is when some eyebrows were raised. I was then sent to the hospital downtown for a ct scan. The doctor did a physical abdominal exam (why do they do that???? It brings me to tears every time!) and asked if I was a smoker. I knew that was a 'cancer' question. When I told him that I am not, he just went, 'hmmmmm' and I thought, 'what the he**!!! I don't think this disease is brought on by smoking, but at that time they were juggling with the notion that either I had MP or lymphoma. I ended up in and out of emergency for pain management until I was just admitted. I had to ct's done in that time and my inflammations had grown over that six day period and that's when schedules were cleared and they did an emergency endoscopy and colonoscopy the next day and the day after that an emergency surgical biopsy which all came back positive for MP. After a massive 5 month dose of prednisone, I began experiencing esophageal spasms and was hospitalised for another 10 days to get things under control. I went into remission for two years. I actually began to forget that I actually had this disease, but August 2017, it reared it's ugly head. It was a very stressful and heartbreaking time for me (my dad suddenly came down with cancer while I was working full time and planning my first son's wedding!) and I have been battling it ever since. Today has been a rough day for me and I have seen that weather has been a factor in pain levels! That's a problem for someone living in this climate (Canada!). I am hoping that the azathioprine (200 mg. daily), tamoxifen (20 mg. daily), prednisone (4 mg. daily) and CBD oil might be the right 'cocktail' for me! I'm honestly sick and tired of beginning my day with so much medication, but I suppose if it helps, I shouldn't complain. I now have severe osteoporosis, which I think, in part can be attributed to the prolonged prednisone use. At least that's a shot once every 6 months, rather than a daily pill! Sorry for the novel…

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@kimh

Hello @dementorshoes ! Yes, I have also had hysterectomy, oopherectomy and gall bladder surgery; not to mention surgical biopsy for diagnosis for MP! But, to be honest, I never felt that I had a problem with MP until two weeks after a nasty slip and fall on black ice (March 19, 2014….close to 5 year anniversary!!!). Two weeks to the day of the fall, I began experiencing symptoms, which my husband and the local clinic suspected that perhaps I had kidney stones that may have been shattered from the fall. The next morning, I was called back in to the clinic for an ultrasound and that is when some eyebrows were raised. I was then sent to the hospital downtown for a ct scan. The doctor did a physical abdominal exam (why do they do that???? It brings me to tears every time!) and asked if I was a smoker. I knew that was a 'cancer' question. When I told him that I am not, he just went, 'hmmmmm' and I thought, 'what the he**!!! I don't think this disease is brought on by smoking, but at that time they were juggling with the notion that either I had MP or lymphoma. I ended up in and out of emergency for pain management until I was just admitted. I had to ct's done in that time and my inflammations had grown over that six day period and that's when schedules were cleared and they did an emergency endoscopy and colonoscopy the next day and the day after that an emergency surgical biopsy which all came back positive for MP. After a massive 5 month dose of prednisone, I began experiencing esophageal spasms and was hospitalised for another 10 days to get things under control. I went into remission for two years. I actually began to forget that I actually had this disease, but August 2017, it reared it's ugly head. It was a very stressful and heartbreaking time for me (my dad suddenly came down with cancer while I was working full time and planning my first son's wedding!) and I have been battling it ever since. Today has been a rough day for me and I have seen that weather has been a factor in pain levels! That's a problem for someone living in this climate (Canada!). I am hoping that the azathioprine (200 mg. daily), tamoxifen (20 mg. daily), prednisone (4 mg. daily) and CBD oil might be the right 'cocktail' for me! I'm honestly sick and tired of beginning my day with so much medication, but I suppose if it helps, I shouldn't complain. I now have severe osteoporosis, which I think, in part can be attributed to the prolonged prednisone use. At least that's a shot once every 6 months, rather than a daily pill! Sorry for the novel…

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Oh, and big on blame?? The caretaker that was supposed to spread salt on the ice that day (I had specifically asked her to do this and there were 8 large bags just sitting in the boiler room) has never been disciplined or even bothered to apologise to me. I wasn't the only one who fell. There were nine people that slipped and fell that day due to her negligence, but of course, I was the lucky one and won the MP prize lol……

Liked by dementorshoes

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@kimh

Oh, and big on blame?? The caretaker that was supposed to spread salt on the ice that day (I had specifically asked her to do this and there were 8 large bags just sitting in the boiler room) has never been disciplined or even bothered to apologise to me. I wasn't the only one who fell. There were nine people that slipped and fell that day due to her negligence, but of course, I was the lucky one and won the MP prize lol……

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What are your symptoms?
I went to 2 gi drs and they both say conflicting things.

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@kimh

Oh, and big on blame?? The caretaker that was supposed to spread salt on the ice that day (I had specifically asked her to do this and there were 8 large bags just sitting in the boiler room) has never been disciplined or even bothered to apologise to me. I wasn't the only one who fell. There were nine people that slipped and fell that day due to her negligence, but of course, I was the lucky one and won the MP prize lol……

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The doctor today that right back pain can't be part of any stomach issue!!!

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@robinbeth6

The doctor today that right back pain can't be part of any stomach issue!!!

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Hi Robinbeth6-mine, at its worst, can be like “back labor.” So –

Liked by dementorshoes

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I love that someone, besides myself, compared the pain to back labor. I can, without hesitation, say that MP pain is the worst pain I've ever had. And pain and I are very close, old friends. At it's worst, which thank God doesn't last long although it is frequent, it hits an easy 10 on the pain scale. I resent having to take medicine, but have accepted it's necessity. I really resent asking for pain meds, especially because only the strongest of narcotics seems to work on the pain from MP. Thankfully, doctors are quite understanding and sympathetic to this, though pharmacists eye me suspiciously with judgemental expressions on their faces (it doesn't help that I'm covered in tattoos, albeit harmless ones of Harry Potter and Star Wars). I believe docs are so accommodating because managing pain is truly all most can do for us. Getting that aspect of MP handled is vital so you can focus on getting the help you need. I've just learned my 2nd GI's referral to Mayo is useless as they don't accept my insurance, and my millions are tied up in the Florida swamp land real estate market. 😐 Sense of humor doesn't hurt, either. I particularly liked Robin's reference to her MP anniversary and reward.

Liked by kimh, dinayo

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@dementorshoes

I love that someone, besides myself, compared the pain to back labor. I can, without hesitation, say that MP pain is the worst pain I've ever had. And pain and I are very close, old friends. At it's worst, which thank God doesn't last long although it is frequent, it hits an easy 10 on the pain scale. I resent having to take medicine, but have accepted it's necessity. I really resent asking for pain meds, especially because only the strongest of narcotics seems to work on the pain from MP. Thankfully, doctors are quite understanding and sympathetic to this, though pharmacists eye me suspiciously with judgemental expressions on their faces (it doesn't help that I'm covered in tattoos, albeit harmless ones of Harry Potter and Star Wars). I believe docs are so accommodating because managing pain is truly all most can do for us. Getting that aspect of MP handled is vital so you can focus on getting the help you need. I've just learned my 2nd GI's referral to Mayo is useless as they don't accept my insurance, and my millions are tied up in the Florida swamp land real estate market. 😐 Sense of humor doesn't hurt, either. I particularly liked Robin's reference to her MP anniversary and reward.

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Sounds like we have lots in common Dementorshoes! I’ve just jumped in here but it is good to hear of any similarities between us who share this crazy disease. Thank you for sharing.

Liked by kimh, dementorshoes

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@robinbeth6

The doctor today that right back pain can't be part of any stomach issue!!!

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Hah! My pain started in my right kidney area. He can check the results of 5 different ct scans and the report from a surgical biopsy! Get a new doctor!

Liked by dementorshoes

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@robinbeth6

The doctor today that right back pain can't be part of any stomach issue!!!

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On my first ER trip, I was misdiagnosed with a pulled muscle in my back and sent home. An MRI showed no change in the crappy disc issues my neurosurgeon is already well aware of. I had emergency surgery 2 years ago on my back for Cauda Equina Syndrome. A day and a half later, during a tearful phone call to the PA on-call with my neorosurgeons office, I was told to call 911, this is NOT a pulled muscle nor is it your spine. She knew of my AAA last year and was worried about one of the arterial stents migrating and causing the intense abdomin and back pain. That visit's CT showed the MP. First GI was downright cocky about claims to have treated this dozens of times. I didn't need a doctor whose ego was more important than my health. My 2nd GI, bless him, has referred me out for help (No go at Mayo so hoping for Stands or Cleveland clinic) because, in much appreciated candor stated "I don't know how to treat this, so we'll send you to someone who does". I promise you that you know as much about MP, courtesy of this board and Google, as your primary. Keep looking. And hang in there.

Liked by kimh

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@dementorshoes

On my first ER trip, I was misdiagnosed with a pulled muscle in my back and sent home. An MRI showed no change in the crappy disc issues my neurosurgeon is already well aware of. I had emergency surgery 2 years ago on my back for Cauda Equina Syndrome. A day and a half later, during a tearful phone call to the PA on-call with my neorosurgeons office, I was told to call 911, this is NOT a pulled muscle nor is it your spine. She knew of my AAA last year and was worried about one of the arterial stents migrating and causing the intense abdomin and back pain. That visit's CT showed the MP. First GI was downright cocky about claims to have treated this dozens of times. I didn't need a doctor whose ego was more important than my health. My 2nd GI, bless him, has referred me out for help (No go at Mayo so hoping for Stands or Cleveland clinic) because, in much appreciated candor stated "I don't know how to treat this, so we'll send you to someone who does". I promise you that you know as much about MP, courtesy of this board and Google, as your primary. Keep looking. And hang in there.

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Does anyone know any drs.in new York?

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@dementorshoes

On my first ER trip, I was misdiagnosed with a pulled muscle in my back and sent home. An MRI showed no change in the crappy disc issues my neurosurgeon is already well aware of. I had emergency surgery 2 years ago on my back for Cauda Equina Syndrome. A day and a half later, during a tearful phone call to the PA on-call with my neorosurgeons office, I was told to call 911, this is NOT a pulled muscle nor is it your spine. She knew of my AAA last year and was worried about one of the arterial stents migrating and causing the intense abdomin and back pain. That visit's CT showed the MP. First GI was downright cocky about claims to have treated this dozens of times. I didn't need a doctor whose ego was more important than my health. My 2nd GI, bless him, has referred me out for help (No go at Mayo so hoping for Stands or Cleveland clinic) because, in much appreciated candor stated "I don't know how to treat this, so we'll send you to someone who does". I promise you that you know as much about MP, courtesy of this board and Google, as your primary. Keep looking. And hang in there.

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You were fortunate to have a doctor admit not knowing how to treat but willing to refer to someone who does. I went for seven years before someone diagnosed my Carcinoid cancer which was the underlying disease of my MP.

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@musicflowers4u

You were fortunate to have a doctor admit not knowing how to treat but willing to refer to someone who does. I went for seven years before someone diagnosed my Carcinoid cancer which was the underlying disease of my MP.

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Im so sorry to hear that.I hope you are feeling better!!

Liked by dementorshoes

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@musicflowers4u

You were fortunate to have a doctor admit not knowing how to treat but willing to refer to someone who does. I went for seven years before someone diagnosed my Carcinoid cancer which was the underlying disease of my MP.

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I'm very sorry and hope your health improves. I'm currently back in the hospital, and simply over it. Another CT, 2 ultrasounds, and another MRCP, all show the MP is still present and unchanged. For added fun, I had a blockage in NY small intestine. After a pissing contest between the surgeon and internal med doc, they inserted an NG tube (that's out, thank goodness). Cancer markers in my blood work were mentioned. But that's all, just mentioned. I'm hoping that at Shands, something can be done beyond treating pain. I'm extremely frustrated, but that could be because I'm sick of Jello.

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Hi, I'm so glad I found this place, almost impossible to find people with stories about MP, I wanted to share mine!
Last week I had an episode of pain and went into ER. They did a CT scan and confirmed it was appendicitis, and on the same day I got it removed.
I went back to the hospital yesterday to get my exam results and It says:
"Densification of mesenteric fat with small lymph nodes, non-specific, but suggesting mesenteric panniculitis".
I quickly went searching for it and ended up finding you guys. My doubt is,on the same CT report it says also "Densification of fat near the appendix" related to my appendicitis condition, I was wondering it those things could be related or if it could cause any kind of misdiagnose.
The exam says I dont have any enlarged lymph nodes in my abdomen or pelvic area, I'm a 35 year old man and never had any symptoms of MP. I'm trying to find a doctor who specializes on it, but I live in Brazil and so far I couldn't.
Thank you!

Liked by dementorshoes

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