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

@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

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Hello Dennis @dennisl27 , Von here. Sorry to hear you were not accepted at Mayo Clinic, I am disappointed to hear that. Iknow you have really had a tough time with your symptoms and your family has been through such difficult times in the past years. I don’t have any suggestions that you haven’t already tried at this moment but that doesn’t mean there’s not a solution or hope. So many go through this, it’s sad. It is all about being persistent and finding the right doctor. Again my prayers are for you to find desperately needed help.
@vdouglas

Liked by denia

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@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

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VonThank you sir!!Your thoughts and very kind words are truly appreciated!Best regards 

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@colleenyoung

Hi @bertbiz. It appears that you were able to post to this thread successfully. Welcome to the Connect community.
If you have any other questions about using the website, see the link How to Get Started on Connect https://connect.mayoclinic.org/get-started-on-connect/ or send me a message.

We look forward to getting to know you. Do you have Mesenteric Panniculitis or Schlerosing Mesentertis?

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Hello,

Yes he was diagnosed by CT with MP a month ago from Cairo Egypt. I

have not started any meds yet, all blood tests are normal and there is

no symptom except the feeling of having a solid part on the right side

of the abdomen .

please find the attached files

Best regards
Mostafa Said Amin

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@colleenyoung

Hi @bertbiz. It appears that you were able to post to this thread successfully. Welcome to the Connect community.
If you have any other questions about using the website, see the link How to Get Started on Connect https://connect.mayoclinic.org/get-started-on-connect/ or send me a message.

We look forward to getting to know you. Do you have Mesenteric Panniculitis or Schlerosing Mesentertis?

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Hello @mostafaamin, I am glad to hear you are not having any major symptoms. It is possible that, if you are asymptomatic, no treatment may be necessary. I am not a Doctor and do not give medical advice. The CT scan must rule out other medical issues, but it is documented that the condition may resolve on its own without treatment. The feeling on the right side of the abdomen needs to be looked at by your physician but is similar to what I experienced. Are you still in Cairo?
Best wishes that you continue to be without symptoms.
@vdouglas

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@colleenyoung

Hi @bertbiz. It appears that you were able to post to this thread successfully. Welcome to the Connect community.
If you have any other questions about using the website, see the link How to Get Started on Connect https://connect.mayoclinic.org/get-started-on-connect/ or send me a message.

We look forward to getting to know you. Do you have Mesenteric Panniculitis or Schlerosing Mesentertis?

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Hello again @mostafaamin, I hope you can find this information useful: https://rarediseases.org/rare-diseases/mesenteric-panniculitis/
@vdouglas

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I have a question about Meloxicam.Is it better to take it as needed?Or just to take it daily?I will take it,feel great…then think I can do with out and the inflammation comes back with a vengeance.Anyone else taking it?

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@poppy73

I have a question about Meloxicam.Is it better to take it as needed?Or just to take it daily?I will take it,feel great…then think I can do with out and the inflammation comes back with a vengeance.Anyone else taking it?

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I took it every day for 8 weeks until I got my inflammation under control, then every other day. I have found that if I skip too many days of taking it, I will have a minor set back. When I have a flare up of inflammation, I go back to taking it every day until things are under control again. I always take it with my biggest meal of the day.

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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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Hello @billindc, I came upon this older post you made and wanted to see how you were doing.
It’s kind of coincidental that, in your post, you mentioned your platelets being low. I was just informed my platelets were low and was advised to discontinue taking the 81mg aspirin regimen that I was told to begin about 10 years ago. I have not had my follow up to see if they came back up but am scheduled in January 2017. My baseline CRP was normal after I became asymptomatic. I also take 2,000mg fish oil and wish to use probiotics but haven’t thus far. I am including some pickled products like sauerkraut in my diet to see how it reacts in the gut. None of this probably means much but thought I would throw it out there. Good points made on the pain meds legislation and research. Keep up the good attitude!
Is this the study you were talking about? http://www.cghjournal.org/article/S1542-3565(07)00224-8/pdf

If I may ask how did your Mayo visit go back in July? did everything work out well regarding the forearm lump you were worried about?
I hope your health continues to get better.
Best regards,
@vdouglas

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Looking back I remember in the lat 15 years having episodes where my stomach felt sore with no other symptoms. I use to say it felt like someone socked me in the gut or like I had been doing hundreds of sit ups or crunches. I wonder if this was the MP. Has anyone else had this. For the past week I have been getting this feeling a lot. Having an MRI enterography on Nov 6. When I went to see my GI doctor I hadn’t really been experiencing too much. But for the past week my stomach has been hurting and I have been slightly nauseated. I can not take steroids and anti inflammatory medications bother my stomach, not sure what other treatments there are for this. Wondering if something I am eating is causing it. Please any input or suggestions appreciated. Suppose to go back to the doctor Dec 5, but I may have to be calling him sooner the way I have been feeling.

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Hi @judy147

I’m tagging fellow Connect members @snoopdog @amyd @bertbiz @bakb @doron, and Mentor @vdouglas as they may have some insight for you. Have you considered transitioning to any special diets, for example the FODMAP diet?

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@colleenyoung

Hi @bertbiz. It appears that you were able to post to this thread successfully. Welcome to the Connect community.
If you have any other questions about using the website, see the link How to Get Started on Connect https://connect.mayoclinic.org/get-started-on-connect/ or send me a message.

We look forward to getting to know you. Do you have Mesenteric Panniculitis or Schlerosing Mesentertis?

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M. Were you able to make an appt with the doctor referral I gave you in Cairo who agreed to see you? Gave you all their contact info. Thx xo

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@colleenyoung

No problem @gmeg. Not everyone has Facebook. You can continue sharing here. Some members do both, others only share on Connect and others prefer to share only on the Facebook group. Luckily we are connected through the members who share on both. If any of your questions or concerns don’t get addressed here, I’m confident someone who shares on both will help you out.

Happy to have you in the group.

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Thx collen! We’ve got over 400 members now across the world including the leading doc leading worldwide the research on the mesentery and its diseases. He was also just awarded Guinness world records for 2018 for his research on and on the mesentery!!! Any one wanting to join the private page pls contact me at Lisa schwart in tulsa Oklahoma. Or my I do is also on my profile here. Doing tons of networking getting people networked together with treating GIs for MP/SM work all across the USA and approx 15 other countries. Xoxox

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@colleenyoung

Hi @bertbiz. It appears that you were able to post to this thread successfully. Welcome to the Connect community.
If you have any other questions about using the website, see the link How to Get Started on Connect https://connect.mayoclinic.org/get-started-on-connect/ or send me a message.

We look forward to getting to know you. Do you have Mesenteric Panniculitis or Schlerosing Mesentertis?

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M. I had tagged you in this answer on the fb page. Do you need me to resend?

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@tarad

First of all, MANY thanks to @vdouglas, for finding my original post in the auto immune forum here on TMC connect site. I’m so relieved (as morbid as that is to say) to see that I really am NOT alone…. I’ll preface by saying there is a very real possibility I may rely heavily on everyone’s experiences through this in this forum.

I feel like I’m slowly going crazy… I had a hysterectomy May 9, 2017. By August, I was diagnosed with mesenteric panniculitis that was “accidentally discovered” when I continued having abdominal pain after surgery (my gyno naturally thought it was my ovaries; CT scans done and radiologist found the MP). I was sent to a surgical oncologist that was said to be a “GI guru” and have extensive knowledge in all things “weird and rare”. He was rather dismissive about it all as, based on my lab work my gyno had done, there was nothing that made him think there was a concern for cancer. Just brushed it off as an “annoyance issue”, that the pain could stay for a month or a year, but he would give me Mobic to help with the inflammation and it should eventually resolve itself (standard treatment for MP is through steroids, but I have anaphylactic reactions to all steroids, and I’m kinda trying to NOT die….). I’m a month in on the Mobic, the flare ups in pain are more frequent with the pain being more and more intense. Nausea has also started to set up and my appetite is waning, at best, as most of the time, the thought of food makes me sick. My PCP and gyno weren’t pleased with the consult I had from oncol. One has ordered a repeat CT to be done in a couple of months to monitor progression/improvement. The other has referred me to gastro and hematology. I had a positive ANA and a positive double strand DNA. My spleen has been consistently mildly enlarged on the past few CT’s I’ve had done. Research material on this is limited. I feel like I’m in a snowglobe, being shaken up with all these doctors, throwing around words like “necrosis” and “restricted blood flow” and “cancer” and referral after referral. I’m frustrated and tired of “hurry up and wait”….

What’s your insight on what I’m looking at long term?? I’ve never had anything chronically, so I’m lost on what to expect. My PCP is very literally clueless. The “GI guru” has, in effect, blown me off – I called seeking helping when the Mobic failed to work. All I’ve gotten was a text message from the pharmacy saying my Rx was ready (apparently, he just called in something new without talking with me about what I had going on). Today, I got a call from his office saying they were going to refer me to a gastro but saw that I was already scheduled and wished me best of luck. Still have not spoken to him. Glad my intestinal tract hasn’t shriveled up and fallen out waiting for him to get back with me (sarcasm).

Hit me with whatever info you’ve got. Books. Articles. Suggestions on diet modifications. Meds you’ve tried that were successful. Anyone tried anything holistically? I am desperately wanting to “get in front of the ball” as best I can – the bad days are BAD. I have two kids to raise, one 16 and one 6. Mommy doesn’t have time for debilitating…..

Bless every one of you all!!!!!!! Sending everyone lots of hugs and support from Kentucky!!!!!!

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We’ve got over 400 members now across the world including the leading doc leading worldwide research on the mesentery and its diseases. He was also just awarded Guinness world records for 2018 for his research on and in the mesentery!!! Any one wanting to join the private page pls contact me at Lisa schwart in tulsa Oklahoma on facebook. Or my Info is also on my profile here. Doing tons of networking getting people networked together with treating GIs for MP/SM work all across the USA and approx 15 other countries. Xoxox

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@judy147

Looking back I remember in the lat 15 years having episodes where my stomach felt sore with no other symptoms. I use to say it felt like someone socked me in the gut or like I had been doing hundreds of sit ups or crunches. I wonder if this was the MP. Has anyone else had this. For the past week I have been getting this feeling a lot. Having an MRI enterography on Nov 6. When I went to see my GI doctor I hadn’t really been experiencing too much. But for the past week my stomach has been hurting and I have been slightly nauseated. I can not take steroids and anti inflammatory medications bother my stomach, not sure what other treatments there are for this. Wondering if something I am eating is causing it. Please any input or suggestions appreciated. Suppose to go back to the doctor Dec 5, but I may have to be calling him sooner the way I have been feeling.

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Hello @judy147, sorry you are not feeling well and I hope your MRI reveals favorable results. Before being diagnosed with MP I used to tell my wife that my stomach felt like it was trying to digest a belly full of rocks. Thinking back, I’ve always had what everyone referred to as “a nervous stomach”. I do not know if this “prior stomach issue” is at all related to MP, I have never read that in any case study but since there haven’t been many study’s done it probably wouldn’t get mentioned anyway. I have also wondered the same thing about those prior-to-diagnosis issues.

I am asymptomatic, I was told by Dr. Pardi at the Mayo Clinic that I can still get a stomach ache and I can get sick, that doesn’t mean I have to go to the ER every time that happens. Dr. Pardi encouraged me to not make the assumption that because I have MP I need to run to the ER every time I have a stomach ache. Those comments were based upon my history and multiple CT scans. I’m not suggesting this is related to you or anyone else in any way but just wanted to let you know what I was told in case it could help you in any way.
I am not a doctor, but what I watch for is dehydration (especially if vomiting) and no bowel activity. If these occurred for an extended time I would be seriously concerned.

@kanaazpereira had a very good suggestion maybe the FODMAP diet would be a good start. For me it’s diet also. At the top of my basic list of suggestions to feel well it would be to stay regular, drink enough water and eat the proper foods. Don’t get constipated, don’t over eat or eat a heavy meal or eat foods that are known to create gas. Try to be gentle on your tummy.

Your MRI is a little ways off so would you keep us posted up till then? Please let us know how you are progressing.
Von @vdouglas

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