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 group.

@dennisl27

Hi again everyone! Well I had my surgery to remove the abdominal masses and they turned out to be lipomas. They were both benign. I have also been diagnosed with central sleep apnea so I was prescribed an ASV machine which I use every night. My MP is still active. I rarely have any appetite at all. So I force myself to eat. They have taken away several of the meds I was on with the intent of that being the reason for always being tired with heavy limbs, fatigued all of the time with no relief from a good nights sleep. Any advice on these continuing conditions? There are days when even getting out of bed is a chore. It’s getting very frustrating to not get any relief and for the doctors to not be able to get it figured out. I go for an electromyoggraphy and nerve condition test this week. The pain management doctor mentioned peripheral neuropathy or peripheral radiculopathy. The appt is this Tuesday so I will let you know how that turns out. Has anyone had these concerns/symptoms that you are dealing with?

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Hi @dennis127, sounds like really good news regarding the surgery and it certainly sounds like you are making great progress getting help. Sometimes it is very frustrating waiting for a fix for some very complex medical issues. I think you had an appointment today? How did that go? I have never heard of an electromyography but will look it up. Got to look up the peripheral radiculophy also.
Hang in there and keep improving. You sound like you are doing better, I think that is a positive sign.
As always, best wishes for you and your wife.

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@dennisl27

Hi again everyone! Well I had my surgery to remove the abdominal masses and they turned out to be lipomas. They were both benign. I have also been diagnosed with central sleep apnea so I was prescribed an ASV machine which I use every night. My MP is still active. I rarely have any appetite at all. So I force myself to eat. They have taken away several of the meds I was on with the intent of that being the reason for always being tired with heavy limbs, fatigued all of the time with no relief from a good nights sleep. Any advice on these continuing conditions? There are days when even getting out of bed is a chore. It’s getting very frustrating to not get any relief and for the doctors to not be able to get it figured out. I go for an electromyoggraphy and nerve condition test this week. The pain management doctor mentioned peripheral neuropathy or peripheral radiculopathy. The appt is this Tuesday so I will let you know how that turns out. Has anyone had these concerns/symptoms that you are dealing with?

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Hi Von,
It is always so good to hear from you and I hope that you are doing good as well. I passed along your well wishes to my wife, she appreciated that. We are on a 3 week chemo therapy for her now, instead of weekly. It’s more of a maintenance dose until her next scans which are scheduled for May 8th. Then they decide next steps, depending on the progression of the cancer, or the lack there of (which is what is in our prayers). My electromyography and NCT (nerve conduction test ) went well yesterday. They basically stick needles in you and send shock signals to the nerve points to see what’s going on with the nerves in my legs and what’s causing the swelling, the pain and fatigue that’s keeping me from walking more than a few steps. I get those results back this Friday when I have a follow up appointment. The follow up appt is to inject my back with medial branch block epidural injections to assist with my lower back pain. I will let you know how it goes, what the results of the electromyography were and how the pain management injections went.
As always, thanks for your support and I’ll talk to you soon.
Dennis

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@dennisl27

Hi again everyone! Well I had my surgery to remove the abdominal masses and they turned out to be lipomas. They were both benign. I have also been diagnosed with central sleep apnea so I was prescribed an ASV machine which I use every night. My MP is still active. I rarely have any appetite at all. So I force myself to eat. They have taken away several of the meds I was on with the intent of that being the reason for always being tired with heavy limbs, fatigued all of the time with no relief from a good nights sleep. Any advice on these continuing conditions? There are days when even getting out of bed is a chore. It’s getting very frustrating to not get any relief and for the doctors to not be able to get it figured out. I go for an electromyoggraphy and nerve condition test this week. The pain management doctor mentioned peripheral neuropathy or peripheral radiculopathy. The appt is this Tuesday so I will let you know how that turns out. Has anyone had these concerns/symptoms that you are dealing with?

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Hi Bill
Yea, our symptoms sound very similar. I am on an ASV machine for my central sleep apnea. It seems to be working for me. What are you using for your central sleep apnea? I get the results back from my electromyography this Friday to see what’s causing the pain and swelling in my legs? If it is indeed related to my lower back pain I have injections this Friday called Medial branch block injections. This is very frustrating because I used to be on my feet like 10-12 hours a day at work, now I have to use a motorized cart just to get around at the drugstore or grocery store. But like you said things could be worse. I had to file for Social security disability and should hopefully hear back from them soon. It’s humbling to be in this condition without any answers but we are trying. Prayers and a positive attitude get us thru each day and our motto is “the 2 days we won’t worry about are yesterday and tomorrow”.
I hope you continue to do well!
Best wishes to you!
Dennis

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Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis….have no idea about any of it.

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Hi Missy, I’ll send you a private message in here for some addl info on a private group with over 340 members with MP or SM.
Lisa

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@missisays7

Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis….have no idea about any of it.

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Hello @missisays7, Welcome to this discussion group.
Sorry to hear they dropped the “suggestive of Mesenteric Panniculitis” Bomb on you. There is a lot of information available through this group and other groups as well. There is “Some” good information on the internet.

Are you having severe symptoms? On any Meds at this time? Seen a Gastroenterologist? I don’t mean to pry but those are some of the questions that give some information on where you are in the process of things.

I don’t want to comment on what Suggestive of Panniculitis could mean but I do know it may not be not such a bad thing depending on the other information included in your CT reading. Was your CT with contrast injection?

Hope to hear back from you, best wishes for your health and peace of mind.

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@missisays7

Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis….have no idea about any of it.

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Thank you. Im Gulf War Illness veteran and due to the myriad of symptoms that can include…which intestinal condtions such as sjogrens disease and others….things are overlooked….we muddle through the system with this vague list of symptoms and that. In 2013 I had ascites after passing kidney stones….severe…fluid around all my organs..hospitalized….and thus series of tests began. They noted issues in abdomen…life went on…stuff ignored as usual.
Then early this month I contracted rocky spotted mountain fever ( confirmed by lab taken days later just got confirmation today) was in ER for abdominal pain. On the CT they noted progression from the stuff in 2013 and through out the mesentery panniculitis……that was incidental to the other notes on the fluid around appendix( rmsf mimics appendicitis) . So in essence…the tick infection led to the CT the VA did not follow up with and this now I know of the mesentery issues progressing.
Had seen a heart doctor this week who looked at all my tests done from 2013 to now…with the ascites and stuff noted in digestive organs and he immediately suggested oncology, hematology and gi for surgery consult.
SO now….I know what mesentery panniculitis means…wow….GLAD to finally meet people who are familiar with it! I have looked all over the internet. Searched on fb and the only thing came up was two people mentioned it in a post. Did not see any groups on it.

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@lisas444

Hi Missy, I’ll send you a private message in here for some addl info on a private group with over 340 members with MP or SM.
Lisa

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Thank you! Have been looking for something like that!

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@missisays7

Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis….have no idea about any of it.

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NO they did not do ct with contrast the reporter of it suggested follow up with contrast…the only follow up was ultrasound that the tech said she didnt understand why they ordered this test..but the heart doctor referred me to oncology, hematology and GI for surgery consult, he is private non va doctor through veteran choice program living 40 miles from nearest VA.

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@missisays7

Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis….have no idea about any of it.

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Wow, I’m going to read your post a couple of times to take it all in.

This is a multi national group so assuming you are US Military, I thank you for your service. Keep us posted on how things progress for you. Hopefully all those issues get prioritized and knocked down one at a time. If you have any questions bring them here, hopefully someone can help. May I suggest to read through past posts, there is some good advice on diet and a lot of good general information about the disease.
Best wishes to you!

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@missisays7

Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis….have no idea about any of it.

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Missy, got your email. You’re unable to find the group as it’s private due to the nature of the disease and symptoms and medical information. Sent you my FB contact info under Lisa Schwart in Tulsa Oklahoma to send me a friend request … I can add you after that. We have a handful with sjorgens as well and can help network you with others in your state or country. I’ve worked networking each and every person I add in to the group w doc hospital info in their states and also docs at mayo and Cleveland clinic that I’ve referred to several now and being seen at Cleveland all under one doc up there who has 6 SM patients now and just texted him with a 7th referral for another. Had coffee with him and discussed our group that we have and continuity of care w mayo and Cleveland providers and also within each state and we have many overseas all across world networking together with docs and also as friends for support.
Lisa .

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@missisays7

Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis….have no idea about any of it.

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THANK YOU! Will contact you on fb. Yes Gulf war illness has been reported with cases of Sjogrens too. I live in Oklahoma also! Just was in Tulsa last week at the mayors veteran committee meeting and welcome home special ceremony to vietnam vets. I looked up on xpertdocs for specialist here in Oklahoma to treat this and hoping she will take my case. It is very hard for me to travel very far with spine disease I also have. SO praying can find one in Oklahoma. There is one in Dallas too. If I have to travel I will…is just hard .

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