1. < Digestive Health

Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

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.

bertbiz | @bertbiz | Dec 21, 2016
In reply to @dennisl27 "Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even..." + (show)
@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don't know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don't have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don't know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

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Hi Dennis,
I am so sorry to hear of what is happening to you and your wife. I agree with everything @vdouglas is saying. The FODMAP diet helped me a lot. I'm sure everyone on this thread has seen me post a link. So I will post it again. http://www.dietvsdisease.org/diy-low-fodmap-diet/ The diet says it's for IBS, but it's for MP, too. Smaller meals are recommended, When I was first diagnosed I was eating chicken broth, adding chicken little by little to it. I made Kefir and banana smoothies adding cinnamon. That seemed very soothing. I stopped eating anything that had corn in it. I've tried several different vegetable, one at a time. Asparagus is not one that I can eat anymore, or onions, either. But through trial and error (I call it Russian Roulette) I've found that I can add some greens (like spinach and steamed artichokes) and not have any problems. It takes a lot of patience to figure things out. You have to find a doctor that is familiar with MP.

I wish you and your wife all the best. You've found a great place to reach out. We're all here to do what we can.

@bertbiz

REPLY
dennisl27 | @dennisl27 | Dec 21, 2016
In reply to @dennisl27 "Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even..." + (show)
@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don't know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don't have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don't know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

Jump to this post

Thank you so much Von! You have given me a lot of encouragement and hope! I am working with my employer now on my leave of absence. I should mention that I also see a cardiologist for my BP as it has been consistently in the 160's - 180's and I keep a journal for them so they can adjust the meds they have me on to treat this. I saw her yesterday and she has initiated my LOA so I can address my BP as well as my MP (with my GI). They are trying to identify the reason for my BP spike, as it seems to have come about at the same time as the MP symptoms. As a side note.....if anyone has any information if there is a direct relationship between BP and MP I would greatly appreciate it. My cardiologist did not know and I cannot find a lot of information on the internet about this. My wife is currently on social security disability, so you were right about her qualifying for that.
We do have an Aunt that we call on for assistance and she has been a great help!
My primary symptoms are the extreme fatigue, headaches and abdominal pain. I will be able to manage those until I see my GI next week. We are taking one day at a time and trying to stay as positive as possible. But it has been difficult during this Christmas season.
Again, thank you so much for your help and if you have anything else for me please send it at your convenience.
Dennis

REPLY
dennisl27 | @dennisl27 | Dec 21, 2016
In reply to @dennisl27 "Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even..." + (show)
@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don't know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don't have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don't know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

Jump to this post

Hello!
I am managing my symptoms for the pain and headaches with tramadol, but it really doesn't do much for me. I do not know what to do for the fatigue and heavy limbs except to lay down and rest. This has been very debilitating so if you have any ideas on this that would be great!
I will look into the caregiver group that you mentioned that sounds like a great group as well.
For the short period of time that I have been a member of this group I already feel better knowing that there are others that have been thru the same things I am experiencing.
Thank you for the great advice as I embark on this journey and for letting me know that I am "not" alone.

REPLY
Von, Alumni Mentor | @vdouglas | Dec 21, 2016
In reply to @dennisl27 "Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even..." + (show)
@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don't know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don't have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don't know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

Jump to this post

Hi again @dennis127
We are all glad to help you any way we can.

It sounds like you have things going in the right direction, that's great! I also take Tramadol (50mg) and you are right about it not doing much for pain. I was told by one of my Doctors that when taking pain meds you want to just keep the pain manageable. The goal is not to eliminate the pain completely. I tend to agree with that Doctors advice as it will prevent overuse and the likelihood of needing an increasing amount of pain meds. But If you are not getting results, and your pain is unmanageable, tell your Doctor. Everyone on this site will tell you that being proactive is a must. You really need to partner with your Doctor and help them help you.
Keep working on getting help at home to minimize the stress that you and your Wife are under. Just do the best you can and get a lot of rest. If you have children it can be difficult but focus on one thing at a time step by step. Try not to worry about things you have no control over. Try to relax and plan ahead.

I have one bit of advice for when you see your Gastroenterologist. You will be checking out the Doctor as well as He or She checking you out. Don't feel like you are under any pressure, just have a conversation with the Doctor. When you meet with him or her ask if they have knowledge of Mesenteric Panniculitis. Are they a PA or MD. Also ask if they have reviewed your CT personally. Not just the report but actually reviewed the images. Does He or She have your complete history and your family history. This is information you should know and important for the Doctor to obtain a proper diagnosis, prognosis and plan for treatment.

I realize you have the BP to deal with as well. I have not read that MP and elevated BP are related. I know that my BP increases when I have it taken by the Doctor their office. My BP also goes up when I'm under a lot of stress at home (I have a home monitor).

You are in our thoughts and Prayers, wishing you good results with your appointment. keep us posted.
@vdouglas

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Dec 22, 2016
In reply to @dennisl27 "Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even..." + (show)
@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don't know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don't have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don't know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

Jump to this post

Hi @dennisl27,

Yes, fatigue can be very debilitating! I'd like to invite you to check out this discussion (Autoimmune Diseases and Fatigue), here on Connect: http://mayocl.in/2hd6onk
Please feel free to post a message, join in the conversation, and tag other members for more information; I hope this helps.

REPLY
denia | @denia | Dec 22, 2016
In reply to @kanaazpereira "Hi @denia, It can be frustrating when your healthcare provider may not seem empathetic to your..." + (show)
@kanaazpereira

Hi @denia,
It can be frustrating when your healthcare provider may not seem empathetic to your symptoms. Seeking a second opinion is always a wise choice, and if you would like to make an appointment at Mayo Clinic, you can use the following link: http://mayocl.in/1mtmR63.
Did your doctor explain what all he needs to rule out before he can make a firm diagnosis of MP?

Jump to this post

I made an appt with a gastro that I used to see several years ago and found out that she is successfully treating a few patients with MP! She gave a 1 week decreasing dose pak for the prednisone then put me on Mobic for 30 days to see if that will relieve some of my symptoms. She thought the Mobic was easier on the body than the prednisone in the long run. She has several patients that are on this with reduced symptoms. Anyone have any experience with Mobic?

REPLY
shirleyfoggepiazza | @shirleyfoggepiazza | Dec 22, 2016
In reply to @kanaazpereira "Hi @denia, It can be frustrating when your healthcare provider may not seem empathetic to your..." + (show)
@kanaazpereira

Hi @denia,
It can be frustrating when your healthcare provider may not seem empathetic to your symptoms. Seeking a second opinion is always a wise choice, and if you would like to make an appointment at Mayo Clinic, you can use the following link: http://mayocl.in/1mtmR63.
Did your doctor explain what all he needs to rule out before he can make a firm diagnosis of MP?

Jump to this post

I have not been writing. Got sepsis from oral surgeon. Antibiotic reaction and will soon get cdiff from month on infusion therapy. Not good.<br>

REPLY
dennisl27 | @dennisl27 | Dec 22, 2016
In reply to @kanaazpereira "Hi @denia, It can be frustrating when your healthcare provider may not seem empathetic to your..." + (show)
@kanaazpereira

Hi @denia,
It can be frustrating when your healthcare provider may not seem empathetic to your symptoms. Seeking a second opinion is always a wise choice, and if you would like to make an appointment at Mayo Clinic, you can use the following link: http://mayocl.in/1mtmR63.
Did your doctor explain what all he needs to rule out before he can make a firm diagnosis of MP?

Jump to this post

Thank you Denia! I had not heard of Mobic. But, I will discuss it with my GI at my appointment next week.

REPLY
dennisl27 | @dennisl27 | Dec 22, 2016
In reply to @dennisl27 "Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even..." + (show)
@dennisl27

Hi, my name is Dennis and I have recently been diagnosed with mesenteric panniculitis. I even went for a 2nd opinion and it was further confirmed by them as well. I am not one who would normally join a chat group as I am a pretty private person when it comes to my health concerns. But, I felt it was imperative to reach out of my comfort zone and join your group as I am at a loss as what to do. My primarary care physician has never heard of this and has pretty much given up and handed me info about it and told me to go see a specialist. I have gotten an appt with a GI in a week.
I am extremely fatigued, heavy limbs, pain in my abdomen and bloating. My wife is battling stage 4 inflammatory breast cancer and I have been her primary caregiver. So, our combined depressive moods have been growing each day. I don't know who to turn to or contact to speak to. I know I have to change primary care physicians but quite frankly don't have the energy to go thru the steps to do this. I will do it because I have to take care of and provide for my family. I also don't know what to tell my employer, as no one has ever heard of this disease, and at this time I cannot work.
If anyone has any advice for me I would appreciate it.
Thank you

Jump to this post

This site has helped a great deal!
Thanks for letting me know about it and the quick response.
Dennis

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Dec 24, 2016
In reply to @kanaazpereira "Hi @denia, It can be frustrating when your healthcare provider may not seem empathetic to your..." + (show)
@kanaazpereira

Hi @denia,
It can be frustrating when your healthcare provider may not seem empathetic to your symptoms. Seeking a second opinion is always a wise choice, and if you would like to make an appointment at Mayo Clinic, you can use the following link: http://mayocl.in/1mtmR63.
Did your doctor explain what all he needs to rule out before he can make a firm diagnosis of MP?

Jump to this post

Hello @denia,

There are a few members on Connect who have used Mobic (meloxicam), although for different conditions. I'd like to introduce you to @nanke99, @rayrachel, @joshmeyers, @mohavegal, @alicea; I hope they can provide more insight.

@denia, have you experienced any side effects from Mobic, such as an upset tummy or indigestion?

REPLY
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