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

@chensley638

I’m anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That’s when I start getting a bit of abdominal pain. When I try to eat or drink, I can’t keep anything down. That’s when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn’t digested. That has happened 5 times since 2011; though I’ve had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have “mild MP”. (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it’s “gastrotis”, “the flu”, “a stomach bug”, and “gastroparesis”. I have another report that I compared it to from 2015, which doesn’t mention ANYTHING about MP. Nor does the one I have from 2011. So… this is new??? I’m only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I’m SO SICK of being told “it’s just the FLU” that, at this point, I would almost rather be told it’s lymphoma.

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So, the GI doctor didn’t seem to think that the MP was a big deal. He said “a little mesenteric inflammation isn’t a big concern and yours is mild”. He also told me not to dwell or be concerned with the label. He said anyone can get a mild inflammation like this with irritation. He blames the irritation on constipation. Which he blames on a poor diet. Im not sure how that works, since I only eat about 900-1200 calories /day on average. Every day I at 1-2 fresh fruit. I eat lots of veggies, daily. I eat granolla for breakfast with 1% milk. I almost never even get a lunch break, which is why all the healthy food. I’m not certain which part he feels could be causing the constipation. Idk. I even drink about 72oz of water per day.

Anyhow, he’s agreed to do an endoscopy to make sure theres nothing “unusual” in my esophagus or stomach, and to do a biposy if there is.

BTW. He seemed more concerned with finding out why I have chronic low Potassium. He also kept asking if I’ve had a fever or sweats. I said no but after a few hours back at work, I realized I have a big box fan on, every day. I thought it’s just cause I run like dog @ work but I’m not certain a of anything anymore. Oh well. Thanks anyhow.

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@chensley638

I’m anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That’s when I start getting a bit of abdominal pain. When I try to eat or drink, I can’t keep anything down. That’s when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn’t digested. That has happened 5 times since 2011; though I’ve had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have “mild MP”. (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it’s “gastrotis”, “the flu”, “a stomach bug”, and “gastroparesis”. I have another report that I compared it to from 2015, which doesn’t mention ANYTHING about MP. Nor does the one I have from 2011. So… this is new??? I’m only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I’m SO SICK of being told “it’s just the FLU” that, at this point, I would almost rather be told it’s lymphoma.

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@chensley638 We appreciate the update. It sounds as if you are now waiting for the endoscopy to determine if there are any other problems in the digestive tract and esophagus.

As your doctor was concerned about your chronic low Potassium level, I did a search on Mayo’s website and came up with this link, http://www.mayoclinic.org/symptoms/low-potassium/basics/definition/sym-20050632. You might read through this and see how it applies to your symptoms. As I read through it, I can understand the doctor’s concern. Do you know what your potassium level is? Has the cause of the low potassium level ever been investigated by a physician before?

Teresa

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@chensley638

I’m anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That’s when I start getting a bit of abdominal pain. When I try to eat or drink, I can’t keep anything down. That’s when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn’t digested. That has happened 5 times since 2011; though I’ve had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have “mild MP”. (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it’s “gastrotis”, “the flu”, “a stomach bug”, and “gastroparesis”. I have another report that I compared it to from 2015, which doesn’t mention ANYTHING about MP. Nor does the one I have from 2011. So… this is new??? I’m only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I’m SO SICK of being told “it’s just the FLU” that, at this point, I would almost rather be told it’s lymphoma.

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Mostly yes. We have done NUMEROUS tests, including kidney ultrasounds, 24hour urine, and blood work, mri, ct, and several others. I determined that the low potassium is a primary cause of my edema and weight gain, which causes my blood pressure spikes, which causes my headaches, which i take medicatiin for, which causes my dizziness… I told my doctor how I felt and he said “good catch”. That’s what we do. We brainstorm together. Its important to me that we dothis. I cant stand doctors who have that “I’m the doctor, let me figure it out for myself” attitude. I have dagnosed myself and my husband numerous times and brought it to him for opinion. But as a nurse and future nurse practitioner (way in the future), he knows that that’s just how I prefer things. After all, every experience is an opportunity to learn.

Anyhow, I am the one who pointed out about the chronic low Potassium. Nobody had ever mentioned it before but I saw a consistency in my lab report that was never addressed. That’s when I switched to my current doctor. Though, he put me on potassium supplements thays brought my level up to 3.5 sometimes it even hits 4.0. We still dont know WHY its low. I requested the GI appt to help figure it out. My doc will approve anything i ask for, as long as it’s witin reason and I provide a good logic for medical necessity. The lowest its been was 3.2. I know that doesnt seem too low, but that same day, i had 10lb weight gain and 200/100 bp. I took a water pill and the next day my weight was back to normal and bp was 122/75 under all other same circumstances.

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@chensley638

I’m anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That’s when I start getting a bit of abdominal pain. When I try to eat or drink, I can’t keep anything down. That’s when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn’t digested. That has happened 5 times since 2011; though I’ve had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have “mild MP”. (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it’s “gastrotis”, “the flu”, “a stomach bug”, and “gastroparesis”. I have another report that I compared it to from 2015, which doesn’t mention ANYTHING about MP. Nor does the one I have from 2011. So… this is new??? I’m only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I’m SO SICK of being told “it’s just the FLU” that, at this point, I would almost rather be told it’s lymphoma.

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@chensley638 That is great that you can partner with your doctor, not all doctors are comfortable with a partnership with their patients. Are there any other specialists who work with low potassium levels? Teresa

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@chensley638

I’m anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That’s when I start getting a bit of abdominal pain. When I try to eat or drink, I can’t keep anything down. That’s when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn’t digested. That has happened 5 times since 2011; though I’ve had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have “mild MP”. (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it’s “gastrotis”, “the flu”, “a stomach bug”, and “gastroparesis”. I have another report that I compared it to from 2015, which doesn’t mention ANYTHING about MP. Nor does the one I have from 2011. So… this is new??? I’m only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I’m SO SICK of being told “it’s just the FLU” that, at this point, I would almost rather be told it’s lymphoma.

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Absolutely. Nephrologist, cardiologist, and endocrinologist to name a few. The GI doctor would like me to see a nephrologist. A kidney doctor.

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@chensley638

I’m anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That’s when I start getting a bit of abdominal pain. When I try to eat or drink, I can’t keep anything down. That’s when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn’t digested. That has happened 5 times since 2011; though I’ve had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have “mild MP”. (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it’s “gastrotis”, “the flu”, “a stomach bug”, and “gastroparesis”. I have another report that I compared it to from 2015, which doesn’t mention ANYTHING about MP. Nor does the one I have from 2011. So… this is new??? I’m only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I’m SO SICK of being told “it’s just the FLU” that, at this point, I would almost rather be told it’s lymphoma.

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He recommends that my family doctor refer me to an endocrinologist as well. He, as well as my dermatologist, feels that I may have polycystic ovarian syndrome. Although I had already self-diagnosed myself with that several years ago. That, however, would not explain abdominal pain, constipation, vomiting, or any of the other GI symptoms I’ve had. Though it could explain other things like weight gain, acne, hair loss comma unusual female Cycles Etc. It would not explain low potassium. And the low potassium explains the same symptoms as PCOS.

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@chensley638

I’m anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That’s when I start getting a bit of abdominal pain. When I try to eat or drink, I can’t keep anything down. That’s when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn’t digested. That has happened 5 times since 2011; though I’ve had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have “mild MP”. (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it’s “gastrotis”, “the flu”, “a stomach bug”, and “gastroparesis”. I have another report that I compared it to from 2015, which doesn’t mention ANYTHING about MP. Nor does the one I have from 2011. So… this is new??? I’m only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I’m SO SICK of being told “it’s just the FLU” that, at this point, I would almost rather be told it’s lymphoma.

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@chensley638 Once you get through the GI exam, the endocrinologist might be a good next step for you. It sounds as if you have been making progress in working through your symptoms and getting help, but it does sound complicated. Has your endoscopy been scheduled yet? Teresa

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@chensley638

I’m anxious & need to vent my concerns. I hope nobody minds.

For several years I have been experiencing episodes of symptoms that last a few days at a time, but that occur every few months. It usually starts with not being able to have a bowel movement for a couple days. That’s when I start getting a bit of abdominal pain. When I try to eat or drink, I can’t keep anything down. That’s when everything gets really bad and I end up in the ER, vomiting food from days prior, that hasn’t digested. That has happened 5 times since 2011; though I’ve had many more episodes than that.

Anyhow, tomorrow I have a GI consult that I requested. As I was going through all my reports, i found one that said I have “mild MP”. (If I understand it correctly, its possible for MP to press on my intestines and cause a blockade.) That CT was from November 2016. It was never mentioned to me otherwise. I was told it’s “gastrotis”, “the flu”, “a stomach bug”, and “gastroparesis”. I have another report that I compared it to from 2015, which doesn’t mention ANYTHING about MP. Nor does the one I have from 2011. So… this is new??? I’m only 31 years old!! I thought this was primarily something that older adults develop.

Furthermore, my grandma passed away with Lymphoma a few months ago. Since around that time, I have been experiencing a high WBC and edema with a 10lb weight gain in 3 days (20 lb in 2 weeks; 35in 5 months). Plus I have inflammed lymphnodes and bone pain. I’m SO SICK of being told “it’s just the FLU” that, at this point, I would almost rather be told it’s lymphoma.

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Yes. It will be for August 7th. I do plan to see an endocrinologist at some point. If nothing else, for the potential PCOS.

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Had MP for 10 years now severe pain on right side and pelvic area taking tramadol for last 2 years. Have been going to Stanford Medical pain management for about a 1 1/2 years now with little relief. Have had trigger point injections and 1 nerve block but was of no help. Have lost 30 lbs since January 2017 with night sweats thought my Valley Fever was back but infectious disease doctor in Bakersfield, Ca. says no. He is supposed to be one of the best VF doctors in the country. Stanford Medical has no idea, have had thousands of dollars worth of testing everything is normal. Also have pimple like sores that come and go think it might be related to my MP. Stanford Medical doesn’t treat MP any suggestions on anyone on the west coast that knowing anything about MP? If I have to will travel to Mayo on East coast for relief? Thank you in advance. Robert

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I also have had MP for years. Your symptoms sound very much like my own. Sadly no relief only from pain meds on a regular ongoing basis. I am just curious if anyone that has been to Mayo Clinic at any site and has ever achieved relief on a long-term basis from Doctors seen at these sites? Just curious if there is justification for traveling and waiting, testing and then no positive results?

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@carbxbe8206 and @bakb I would like to invite our Members, @billymac65 and @vdouglas, to join us in this discussion. They have been treated at Mayo in Minnesota. I hope that they can add something helpful from their own experience. Teresa

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Welcome to Connect, Robert @carbxbe8206.

I’m sorry to hear about your symptoms, and so glad that you’ve joined this Connect group. You will meet many members who understand your pain and frustration.

I’d like to start by giving you some information, if you wish to seek a second opinion from Mayo Clinic. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Here’s a patient story from Mayo Clinic, which you may interest you:
Research forges path to effective treatment for sclerosing mesenteries: http://mayocl.in/2tUbBHt

I’d like to introduce you to several other Connect members who live with MP, several of whom have been seen at Mayo Clinic. Please meet @billindc @warlick @missisays7 @mdav1943 @doron @croller68 @mardellepoff @gmeg @danrofohio.

@billindc, and @gmeg have also discussed finding “bumps” on skin, and I’m confident they will return with more insight for you.

@carbxbe8206, have you tried any special diets (FODMAP, for example)?

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@carbxbe8206

Had MP for 10 years now severe pain on right side and pelvic area taking tramadol for last 2 years. Have been going to Stanford Medical pain management for about a 1 1/2 years now with little relief. Have had trigger point injections and 1 nerve block but was of no help. Have lost 30 lbs since January 2017 with night sweats thought my Valley Fever was back but infectious disease doctor in Bakersfield, Ca. says no. He is supposed to be one of the best VF doctors in the country. Stanford Medical has no idea, have had thousands of dollars worth of testing everything is normal. Also have pimple like sores that come and go think it might be related to my MP. Stanford Medical doesn’t treat MP any suggestions on anyone on the west coast that knowing anything about MP? If I have to will travel to Mayo on East coast for relief? Thank you in advance. Robert

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Some of that sounds like you need to see a rheumatologist. The rest, i have no idea. 8m still new with all of this.

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@kanaazpereira

Welcome to Connect, Robert @carbxbe8206.

I’m sorry to hear about your symptoms, and so glad that you’ve joined this Connect group. You will meet many members who understand your pain and frustration.

I’d like to start by giving you some information, if you wish to seek a second opinion from Mayo Clinic. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Here’s a patient story from Mayo Clinic, which you may interest you:
Research forges path to effective treatment for sclerosing mesenteries: http://mayocl.in/2tUbBHt

I’d like to introduce you to several other Connect members who live with MP, several of whom have been seen at Mayo Clinic. Please meet @billindc @warlick @missisays7 @mdav1943 @doron @croller68 @mardellepoff @gmeg @danrofohio.

@billindc, and @gmeg have also discussed finding “bumps” on skin, and I’m confident they will return with more insight for you.

@carbxbe8206, have you tried any special diets (FODMAP, for example)?

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Was going to make a general post, but for some reason do not know how to do that (any help along those lines would be greatly appreciated), so putting some info here in the form of a reply. Planning a trip up to Mayo soon, due to such a lack of expertise in DC about this rare disease. With respect to lumps, I have found a small lump under my forearm skin before, and of course, start jumping to worst case lymphoma scenarios, etc. (Has anyone seen the research that seems to indicate that about 28% of MP patients have another, sometimes hidden, malignancies?) I plan on getting it checked out next week. Has anyone had elevated CRP (C-reactive protein) levels with negative ANA and normal sed rates with their MP? My platelets also went low but came back up. I recently experienced that, along with a measles-looking rash and low grade fever. I have not seen anyone mention those symptoms on here before, and wondering if they might be related to MP. Lately, Omega- 3 fish oil and flaxseed powder: one tablespoon in a protein drink daily, have seemed to calm down MP GI symptoms for me, along with probiotics. It keeps me off the pain meds, which recent legislation has made more difficult to obtain for legitimate patients. The harder part for me is keeping a good attitude in light of the fact that there is no real incentive for any drug company to develop a treatment, even if enough patients could be gathered for any type of clinical trial. Just too rare. Dealing with a poorly understood illness that waxes and wanes is, I think, the worse part. My heart goes out to all the sufferers on this site, and I’m so glad we at least have kindred souls with whom to share information and bolster spirits. I try my best to remain in the present and take one day at a time. ~Bill

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Hi, @billindc. Repying to an existing post on the disease you wanted to discuss with other members is a fine way to do it. However, if
you want to start a new discussion, go to the group’s page (here, Digestive Health, http://mayocl.in/292wLFY) and you will find there on the top left under the Discussions tab a gray box that says “Start a Discussion.” When you click that, you will then have the opportunity to start and title a new discussion, if you wish.

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