BillyMac65
@billymac65
@billymac65
Posts: 14
Joined: Dec 06, 2012
Mesenteric Panniculitis or Sclerosing Mesenteritis
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
Liked by fishcox, Bhamilton, jimmymac, LS4 / Lisa Schwart Tulsa Oklahoma (FB page) ... see all
I have IBS, so gas is the norm…. meloxicam works fast. I used it for my tennis elbow pain… but if MP causes gas, Ive got it in spades!
Have you looked into changes in your diet? I went to gluten free and feel so much better. No gas.
ghennel
@ghennel
@ghennel
Posts: 27
Joined: Nov 15, 2019
My husband was diagnosed with mesenteric Panniculitis in 2010 after many decades of visits to GI doctors and hospitals. He had a small bowel obstruction that showed severe inflammation of his mesestery layer. It was first treated with prednisone and liquid diet. The mesentery layer was greatly reduced with 6 months of steady treatment. But since then he has had two more episodes of small bowel obstructions. We are unaware of what triggers such events but we do know that hard vigorous labor aggravates the condition, causung pain, discomfort, insomnia, vision problems, acid indigestion ( now treated with omeprazole. )
Early diagnosis could find nothing and patient was told to seek help from psychiatrist and not a gastric doctor. Decades later MRI results showed increased inflammation in mesentery and diagnosis is mesentery panniculitis. With very little medical information of this very rare condition we are at a loss to finding doctors to treat this disease. Is there a doctor somewhere in New York who can help us.
My daughter has had similar GI problems for years. She is still undiagnosed. I started going on these groups to do research and get info. When she was a teen she had lymphatic malformations which they surgically removed. There was inflammation in mesentery at the time. So they found it, but they did not diagnose her properly and had no idea what the real problem was. They thought the surgery would cure her and 10 years later she still has pain and horrible GI problems. We are at a loss just finding a doctor to diagnose her properly. I am pretty sure she has mesenteric panniculitis since what she had in her teen years is tied in with this type of disorder. Now to hear that even if we can get her diagnosed there really isn't treatment is very frustrating. The healthcare plan she has limits her ability to find a quality doctor who could diagnose her, much less treat her. They too told her to go to a psychiatrist and wanted to put her on an antidepressant. I feel for you and I hope you are able to find help.
PCfromFM
@pcfromfm
@pcfromfm
Posts: 72
Joined: May 14, 2017
My daughter has had similar GI problems for years. She is still undiagnosed. I started going on these groups to do research and get info. When she was a teen she had lymphatic malformations which they surgically removed. There was inflammation in mesentery at the time. So they found it, but they did not diagnose her properly and had no idea what the real problem was. They thought the surgery would cure her and 10 years later she still has pain and horrible GI problems. We are at a loss just finding a doctor to diagnose her properly. I am pretty sure she has mesenteric panniculitis since what she had in her teen years is tied in with this type of disorder. Now to hear that even if we can get her diagnosed there really isn't treatment is very frustrating. The healthcare plan she has limits her ability to find a quality doctor who could diagnose her, much less treat her. They too told her to go to a psychiatrist and wanted to put her on an antidepressant. I feel for you and I hope you are able to find help.
Welcome @ghennel, many of us have had similar experiences. But we -together-have been able to aid each other with important foods/diets to try and medicines that help. Mayo clinic has been a great help to others who have been able to take advantage of it. Ask lots of questions on the site, share your experiences and those of your daughter. Many choices help, cut back on all the stress you can, change your life to get more rest -as much as you can – and try some other suggestions on diet and medications. Best of luck -stick with us!❤️
Douglas, Thank you for the response trying to get into my GI doctor. The last few day have been very rough for me severe nerve pain all over and digestive issues. Can’t take steroids afraid they will activate my Valley Fever, maybe I will have to make a choice on which is worse? I seem to contact all the rare crazy diseases. Taking one day at a time, and keeping a positive outlook. Have been going to Stanford Medical may have to switch to Mayo if my insurance will cover it? Have a great night!
If you don’t mind me asking, where are you geographically located? I see your reference to Valley Fever. I am from Central CA and looking for a specialist to treat My newly diagnosed MP
kimh
@kimh
@kimh
Posts: 186
Joined: Nov 15, 2017
Anybody on here know anything about Mesenteric Panniculitis! I just got a CT Scan diagnosis and not my Dr or anyone knows anything to tell me! Please help!
Umm….welcome to the club?!?! I was diagnosed with MP in 2014 after a bad fall on black ice. After being put on Prednisone for 6 months (that medication has it's own evils!), I went into remission until August 2017. Since August, I have been on Prednisone and Azathioprine (to settle my immune system down) and tamoxifen. I have definitely been battling to get back to remission, but it has been a tough road. Are you feeling any symptoms?
Umm….welcome to the club?!?! I was diagnosed with MP in 2014 after a bad fall on black ice. After being put on Prednisone for 6 months (that medication has it's own evils!), I went into remission until August 2017. Since August, I have been on Prednisone and Azathioprine (to settle my immune system down) and tamoxifen. I have definitely been battling to get back to remission, but it has been a tough road. Are you feeling any symptoms?
Last Sunday I was diagnosed with Mesenteric Panniculitis and a supraumbilical midline hernia through CT scan! The ER doctor had to use Google to tell me what I had because nobody in the hospital has ever heard of it! So all I've been doing is reading up on it but still don't know what to do! The ER Dr told me I need a HUGE diet change from what she read. I've been complaining about stomach pain for so long with my Dr and told him I though I had a hernia and all he did was just give me meds for ulcers. I throw up all the time, I'm constantly so so bloated, I can't eat very much because I get full so fast or food makes me feel nauseated. It's been a rough road so far for so very long 😣
kimh
@kimh
@kimh
Posts: 186
Joined: Nov 15, 2017
Anybody on here know anything about Mesenteric Panniculitis! I just got a CT Scan diagnosis and not my Dr or anyone knows anything to tell me! Please help!
Well, I don't know what diet you are on, so I can not comment. Personally, I limit carbs and spicy food and I seldom eat out, so fast food is almost non existent for me. I'm not sure that my diet makes any difference, except for maybe tolerating the Prednisone. I hope this helps!
Hi there, saw your posts on here about SM and MP. We have a support group with 57 members if you’re interested. It’s a private group to be able to share, support, receive support, doc info, meds, etc. I’m a mom with a pediatric kid with SM. If you write back I can give you the contact info if you’d like. No, it’s not the yahoo group either. That site has information in files, but not a very good support based group and of sharing and talking. We have 57 members on ours!
Can you please send me the group info?!?!? I was just diagnosed a week ago 😔
Hi JimmyMac –
We have 58 people in there now as Erin from this Mayo site joined up with us last week and I added her to it. We are on Facebook and a SM/MP medical group. It’s a closed/secret group so we can all talk and discuss freely about meds, pain, bowel issues, support, venting, laughter, etc. One of my daughter’s docs is in our group as well. My kiddo is currently back in patient on Saturday and still in unfortunately. My name is Lisa Schwart and I am on Facebook, in Tulsa, Oklahoma. If you give me your full name as well and City I can find you and add you as a friend. You aren’t able to “search” the SM group as we have it locked down specifically for everyone’s privacy. I’ve been putting together a database for each person with their doc names in each state etc as a resource for everyone as well! 🙂
Lisa
Brandy Adair
Mesa, Az
Please add me to this group as I was just diagnosed via CT scan last sunday!
kimh
@kimh
@kimh
Posts: 186
Joined: Nov 15, 2017
PCfromFM
@pcfromfm
@pcfromfm
Posts: 72
Joined: May 14, 2017
Hi all, not sure if this group is still active.
I've been diagnosed with Mesenteric Panniculitis (CTS) last December, following 12 months of trying to find foods that I might be allergic to. I'm from Montreal QC, and not sure I'm welcome here, but I haven't found any sites or forums in Canada on this rare disease. Anyway, so I have pains (sometimes severe) but mostly, I feel bloated and nausea. I saw my GP, who told me he read about this in university, but had seen it, and referred me to a Gastro-Enterologist, who's sending me for a colonoscopy, and a gastroscopy in three weeks.
My question: Since last Saturday Feb 23, I feel like I have several large heartbeats in my stomach, does this sound familiar to anyone?
Thank you in advance for your answers/help
Jacques
I do feel that! I've said it before and people looked at me like I was crazy!
I'm not sure how to do that…but if you follow the 'chain' of conversations, I think you will find some common threads with this disease. There is very little research on this disease unfortunately. I have had numerous ct's and a surgical biopsy to diagnose me.
Thank you! I need the biopsy next to confirm! My primary Dr acts like this all no big deal. Which is super ANNOYING 😡
@constancelee
I am now healing from major surgery. They tried to take a biopsy by lapro but couldn’t find it. Opened me up to find the mass and check for other underlying conditions. Diverticulitis was found. Nothing else but the small mass. If this becomes inflamed what am I looking at for symptoms? Mine was found by a CT Scan. I understand the experts are at Mayo. PS I went in because of IBS pain on my left side but the mass is on the right. My pain is a 10 on the 1-10 scale.