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

I have had to give up milk….sadly.It just caused to much gas and discomfort.I have been measurably better since. I still eat cheese,moderately….but heavy cream cheese and ice cream never.I am very sad about this.Especially with pie season coming up!

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I am on a Low Phosphate diet so there is a lot of food I am not supppose to be eating like dairy, chocolate, nuts, dark green vegetables to name a few. I think cinnamon is something that bothers me. Of course it is all the foods I like, it couldn’t be liver. Lol

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@judy147

I am on a Low Phosphate diet so there is a lot of food I am not supppose to be eating like dairy, chocolate, nuts, dark green vegetables to name a few. I think cinnamon is something that bothers me. Of course it is all the foods I like, it couldn’t be liver. Lol

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Of course not : ) LoL

You know it is funny you say that.My sister is allergic to cinnamon,and I have been wondering if I am sensitive to it too.

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I have a question.I was originally sent into my diagnosing CT for my lymph nodes and raging inflammation rates.Does anyone else have lymph node inflammation all over their body?

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@poppy73

I have a question.I was originally sent into my diagnosing CT for my lymph nodes and raging inflammation rates.Does anyone else have lymph node inflammation all over their body?

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Hello @poppy73, I hope you are doing well, we all appreciate you sharing your history with this disease.
When I had the first CT scan at the ER there was mention of enlarged lymph within my abdomen but my CT about a year later indicated that I had no significant evidence of lymphadenopathy, as interpreted and reported by Dr. Pardi at the Mayo Clinic.

Definition of Lymphadenopathy: Disease or Enlargement of Lymph Nodes.

Did your CT report state that you had Lymphadenopathy? Are you still taking the Meloxicam for the inflammation?
Wishing you well,
Von @vdouglas

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I am doing better Von,thanks to a lot of information from this page. Doctors have been kind of a dead end for me.

Mine situation was the same.I have enlarged lymph nodes with in the abdomen,but that was not the reason I was sent in.I was sent in because of enlarged lymph nodes in my arms and neck.Everything seemed to check out at the time,thank goodness.I have not been diagnosed with Lymphadenopathy. It sure seems like I have a problem with it.I just got over a horrible throat and sinus infection.It just seems like everything comes to a stop in my lymph nodes.

Yep,still on the Meloxicam.If fact thanks for the the reminder,I just remembered to take it.It makes me a bit paranoid that I cant take other pain killers with it,but I haven’t hit the wall yet.Glad to have it!

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Hi Everyone,
It’s been awhile since I’ve posted. Let’s just say I’ve been on an “MP” adventure. If you go back and look at my posts, I was diagnosed with MP in May of 2016. I took Prednisone and started to feel better. About a little over a month ago, something changed. I didn’t feel better anymore. I was still using the FODMAP diet I posted so often about. But food choices were getting tougher . I was having diarrhea-like episodes, but what was coming out was clear. I know, a little descriptive, but there’s a reason I’m writing about it. I called my GI doc and asked if the symptoms could be gall bladder related. She said we should check. I went in for an ultrasound and sure enough there were gallstone polyps and/or gallstones. One measured 4mm, the other 8mm. I was contacted by a surgeon’s office and was told to come in for a consult. I was told when polyps/gallstones measure 10mm, there is a cancer concern. He told me I should probably have my gall bladder taken out. So we scheduled surgery for two weeks later. I waited to post until I got my results from pathology. Yes, they were polyps/gallstones, as well as gall bladder sludge. Yes, there is such a thing. All the stuff floating around in my gall bladder was blocking various places and that accounted for the pain. There were no malignancies! Great news!! I was also told that I may be on the bubble with ever having MP. The surgeon thought having my gall bladder out would take care of my symptoms. I am three weeks out of surgery today. I don’t have the abdominal pain anymore. I am healing nicely. I am not so colorful (bruising) anymore. The surgery was done laporascopically. I have four incisions that are healing up. It’s still a little like playing Russian Roulette with food for now. I am supposed to be on a low fat diet and introduce new foods in little by little. So I’ve had a little cheese (my staple in life), but not a lot of it. I’ve started eating greens again, which was tough before the surgery.
My point of writing all of this is maybe it’s worth checking out with your doctors, if you haven’t already. I’m hoping that mine was never MP. I just know that on CT Scan, I have a misty Messentary. And maybe it was always that way, and will always be that way. I was told I didn’t have to have any more scans. So I’ll see what the future brings.
I wish all of you good health, or at least good doctors that can get you there. Most importantly, advocate, advocate, advocate for yourselves. Had I not asked about my gall bladder, I would have never known what was going on in that area.
Take Care,
Bertbiz

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We are thrilled to hear from you @bertbiz! And truly happy to hear about your progress. Please continue to update us, and also let us know if you have any questions, comments or suggestions for fellow Connect members…we’re always listening and learning.

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Thank you. Glad to be back!!

Liked by Poppy73

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@bertbiz

Hi Everyone,
It’s been awhile since I’ve posted. Let’s just say I’ve been on an “MP” adventure. If you go back and look at my posts, I was diagnosed with MP in May of 2016. I took Prednisone and started to feel better. About a little over a month ago, something changed. I didn’t feel better anymore. I was still using the FODMAP diet I posted so often about. But food choices were getting tougher . I was having diarrhea-like episodes, but what was coming out was clear. I know, a little descriptive, but there’s a reason I’m writing about it. I called my GI doc and asked if the symptoms could be gall bladder related. She said we should check. I went in for an ultrasound and sure enough there were gallstone polyps and/or gallstones. One measured 4mm, the other 8mm. I was contacted by a surgeon’s office and was told to come in for a consult. I was told when polyps/gallstones measure 10mm, there is a cancer concern. He told me I should probably have my gall bladder taken out. So we scheduled surgery for two weeks later. I waited to post until I got my results from pathology. Yes, they were polyps/gallstones, as well as gall bladder sludge. Yes, there is such a thing. All the stuff floating around in my gall bladder was blocking various places and that accounted for the pain. There were no malignancies! Great news!! I was also told that I may be on the bubble with ever having MP. The surgeon thought having my gall bladder out would take care of my symptoms. I am three weeks out of surgery today. I don’t have the abdominal pain anymore. I am healing nicely. I am not so colorful (bruising) anymore. The surgery was done laporascopically. I have four incisions that are healing up. It’s still a little like playing Russian Roulette with food for now. I am supposed to be on a low fat diet and introduce new foods in little by little. So I’ve had a little cheese (my staple in life), but not a lot of it. I’ve started eating greens again, which was tough before the surgery.
My point of writing all of this is maybe it’s worth checking out with your doctors, if you haven’t already. I’m hoping that mine was never MP. I just know that on CT Scan, I have a misty Messentary. And maybe it was always that way, and will always be that way. I was told I didn’t have to have any more scans. So I’ll see what the future brings.
I wish all of you good health, or at least good doctors that can get you there. Most importantly, advocate, advocate, advocate for yourselves. Had I not asked about my gall bladder, I would have never known what was going on in that area.
Take Care,
Bertbiz

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Wow @bertbiz that great! Being proactive with your health paid off tremendously in this case. It’s also great not to have any more CT scans and be able to eat some foods that you like again. I really hope you quickly and that your health continues to get better. Wouldn’t it be nice to be “normal” again?
Best wishes to you.
Von @vdouglas

Liked by Poppy73

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@bertbiz

Hi Everyone,
It’s been awhile since I’ve posted. Let’s just say I’ve been on an “MP” adventure. If you go back and look at my posts, I was diagnosed with MP in May of 2016. I took Prednisone and started to feel better. About a little over a month ago, something changed. I didn’t feel better anymore. I was still using the FODMAP diet I posted so often about. But food choices were getting tougher . I was having diarrhea-like episodes, but what was coming out was clear. I know, a little descriptive, but there’s a reason I’m writing about it. I called my GI doc and asked if the symptoms could be gall bladder related. She said we should check. I went in for an ultrasound and sure enough there were gallstone polyps and/or gallstones. One measured 4mm, the other 8mm. I was contacted by a surgeon’s office and was told to come in for a consult. I was told when polyps/gallstones measure 10mm, there is a cancer concern. He told me I should probably have my gall bladder taken out. So we scheduled surgery for two weeks later. I waited to post until I got my results from pathology. Yes, they were polyps/gallstones, as well as gall bladder sludge. Yes, there is such a thing. All the stuff floating around in my gall bladder was blocking various places and that accounted for the pain. There were no malignancies! Great news!! I was also told that I may be on the bubble with ever having MP. The surgeon thought having my gall bladder out would take care of my symptoms. I am three weeks out of surgery today. I don’t have the abdominal pain anymore. I am healing nicely. I am not so colorful (bruising) anymore. The surgery was done laporascopically. I have four incisions that are healing up. It’s still a little like playing Russian Roulette with food for now. I am supposed to be on a low fat diet and introduce new foods in little by little. So I’ve had a little cheese (my staple in life), but not a lot of it. I’ve started eating greens again, which was tough before the surgery.
My point of writing all of this is maybe it’s worth checking out with your doctors, if you haven’t already. I’m hoping that mine was never MP. I just know that on CT Scan, I have a misty Messentary. And maybe it was always that way, and will always be that way. I was told I didn’t have to have any more scans. So I’ll see what the future brings.
I wish all of you good health, or at least good doctors that can get you there. Most importantly, advocate, advocate, advocate for yourselves. Had I not asked about my gall bladder, I would have never known what was going on in that area.
Take Care,
Bertbiz

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Thank you, Von. I appreciate your good wishes. I hope to be able to eat fried chicken some day! Not now, but some day.

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@bertbiz

Hi Everyone,
It’s been awhile since I’ve posted. Let’s just say I’ve been on an “MP” adventure. If you go back and look at my posts, I was diagnosed with MP in May of 2016. I took Prednisone and started to feel better. About a little over a month ago, something changed. I didn’t feel better anymore. I was still using the FODMAP diet I posted so often about. But food choices were getting tougher . I was having diarrhea-like episodes, but what was coming out was clear. I know, a little descriptive, but there’s a reason I’m writing about it. I called my GI doc and asked if the symptoms could be gall bladder related. She said we should check. I went in for an ultrasound and sure enough there were gallstone polyps and/or gallstones. One measured 4mm, the other 8mm. I was contacted by a surgeon’s office and was told to come in for a consult. I was told when polyps/gallstones measure 10mm, there is a cancer concern. He told me I should probably have my gall bladder taken out. So we scheduled surgery for two weeks later. I waited to post until I got my results from pathology. Yes, they were polyps/gallstones, as well as gall bladder sludge. Yes, there is such a thing. All the stuff floating around in my gall bladder was blocking various places and that accounted for the pain. There were no malignancies! Great news!! I was also told that I may be on the bubble with ever having MP. The surgeon thought having my gall bladder out would take care of my symptoms. I am three weeks out of surgery today. I don’t have the abdominal pain anymore. I am healing nicely. I am not so colorful (bruising) anymore. The surgery was done laporascopically. I have four incisions that are healing up. It’s still a little like playing Russian Roulette with food for now. I am supposed to be on a low fat diet and introduce new foods in little by little. So I’ve had a little cheese (my staple in life), but not a lot of it. I’ve started eating greens again, which was tough before the surgery.
My point of writing all of this is maybe it’s worth checking out with your doctors, if you haven’t already. I’m hoping that mine was never MP. I just know that on CT Scan, I have a misty Messentary. And maybe it was always that way, and will always be that way. I was told I didn’t have to have any more scans. So I’ll see what the future brings.
I wish all of you good health, or at least good doctors that can get you there. Most importantly, advocate, advocate, advocate for yourselves. Had I not asked about my gall bladder, I would have never known what was going on in that area.
Take Care,
Bertbiz

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I hope that day comes soon and make sure it is home cooked fried chicken not the Kentucky fried kind.

REPLY
@bertbiz

Hi Everyone,
It’s been awhile since I’ve posted. Let’s just say I’ve been on an “MP” adventure. If you go back and look at my posts, I was diagnosed with MP in May of 2016. I took Prednisone and started to feel better. About a little over a month ago, something changed. I didn’t feel better anymore. I was still using the FODMAP diet I posted so often about. But food choices were getting tougher . I was having diarrhea-like episodes, but what was coming out was clear. I know, a little descriptive, but there’s a reason I’m writing about it. I called my GI doc and asked if the symptoms could be gall bladder related. She said we should check. I went in for an ultrasound and sure enough there were gallstone polyps and/or gallstones. One measured 4mm, the other 8mm. I was contacted by a surgeon’s office and was told to come in for a consult. I was told when polyps/gallstones measure 10mm, there is a cancer concern. He told me I should probably have my gall bladder taken out. So we scheduled surgery for two weeks later. I waited to post until I got my results from pathology. Yes, they were polyps/gallstones, as well as gall bladder sludge. Yes, there is such a thing. All the stuff floating around in my gall bladder was blocking various places and that accounted for the pain. There were no malignancies! Great news!! I was also told that I may be on the bubble with ever having MP. The surgeon thought having my gall bladder out would take care of my symptoms. I am three weeks out of surgery today. I don’t have the abdominal pain anymore. I am healing nicely. I am not so colorful (bruising) anymore. The surgery was done laporascopically. I have four incisions that are healing up. It’s still a little like playing Russian Roulette with food for now. I am supposed to be on a low fat diet and introduce new foods in little by little. So I’ve had a little cheese (my staple in life), but not a lot of it. I’ve started eating greens again, which was tough before the surgery.
My point of writing all of this is maybe it’s worth checking out with your doctors, if you haven’t already. I’m hoping that mine was never MP. I just know that on CT Scan, I have a misty Messentary. And maybe it was always that way, and will always be that way. I was told I didn’t have to have any more scans. So I’ll see what the future brings.
I wish all of you good health, or at least good doctors that can get you there. Most importantly, advocate, advocate, advocate for yourselves. Had I not asked about my gall bladder, I would have never known what was going on in that area.
Take Care,
Bertbiz

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Of course!!! Thank you!

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@poppy73

i was wondering,is anyone having skin complications from this disease?I get cold induced panniculitis .Least I think I do…my skin burns from the cold.

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Hi, @pcfromfm. I just happened to come across your post with this photo while searching for something else on this site. Had to let you know that it’s just gorgeous.

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Is this group still active?

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