I just found out I have mesenteric panniculitis after having a CT scan in the ER. I have a follow up appointment and I am trying to find out as much as possible. What questions should I ask the doctor? What test do I need to have and which ones should I avoid? They have me following up with a surgeon, is this the kind of doctor I need to see or should I be following up with someone else. This surgeon does specialize in the upper GI tract. I read this is rare but treatable and sounds like it can go in remission. Am I right. I also have another rare disease called Avascular necrosis or AVN – which I got from taking steroids for my asthma. I saw that steroids is a treatment for this, is there others? Any information would be greatly appreciated.

Hello @judy147,

Welcome to Connect; we’re so glad you joined us, and thank you for sharing your history and diagnosis.

I’d like to introduce you to @billymac65 @danrofohio @vdouglas @mardellepoff @billindc @bertbiz @bakb @snoopdog @dennisl27 @denia @doron @croller68 @gmeg, all of whom have been coping with mesenteric panniculitis (MP), or have loved ones with MP; I’m confident they will share their insights and have more information that might help you.

You may find the following resource helpful to learn more about Avascular necrosis or AVN: http://www.mayoclinic.org/diseases-conditions/avascular-necrosis/basics/treatment/con-20025517

I’d encourage you to view these existing discussions on Mayo Clinic Connect:
– Early stages of avn: https://connect.mayoclinic.org/discussion/early-stages-of-avn/
– Core Decompression Surgery: https://connect.mayoclinic.org/discussion/core-decompression-surgery/
– Do you have chronic hip, knee, shoulder or other joint pain? You may have avascular necrosis: https://connect.mayoclinic.org/discussion/do-you-have-chronic-hip-knee-shoulder-or-other-joint-pain-you-may-have-avascular-necrosis/

I’m also tagging @guener @jay_baruch @sma1952 @billv123 @sebley12 @tllamber @mardigras, and hope they will return to share their experiences about steroid-induced AVN

@judy147, did you have any significant symptoms that led to the diagnosis of MP? How do you currently manage pain relief from the AVN?

Today I went to see a naturopathic doctor as I was getting nowhere with my GP and still waiting to see a Gastrointerologist. Diagnosed with panniculitis mesentery after a 3D CT in October 2017. Decided to wait and see if after a 5 month holiday my spleen enlargement, my liver lesions and my enlarged lymph nodes in my mesentery changed. I took ibufrophen for pain and antinflammatory but got a very itchy rash. Took Gravol ginger tabs for nausea, Maxeran if it was bad. Morphine if the pain got really bad. The GP had diagnosed me with possible but not probable lymphoma. No biopsy was done.
When I returned in April I had another 3D CT done. My liver was the same, my spleen was still enlarged but my lymph nodes had decreased in size. My doctor rescinded my diagnosois but didn’t feel that further Rx was necessary. It is August and I have had recurring pain and nausea.
The naturopath read my CT results and blood work results as well as the internet write ups on PM. We talked about symptoms and he did a physical exam of my abdomen.He said we would try Naltrexone 1.5mg to begin right away as there have been good results lately with this med according to National Organization of Rare Diseases research. I take it at bedtime and we will see in 2 weeks if there is a need to increase the dosage and how my symptoms react. Fingers crossed.

I am not diagnosed,but I just had it show up on a CT. I am glad to know why my ESR and SED rate are so high. I am overwhelmed ,from what I understand it is pretty rare condition?

Hello @poppy73, Welcome to Mayo Connect! This is a great place to ask your questions, share your story and learn what others with similar health concerns are doing for treatments. Have you had a chance to discuss the ESR and SED rates with your doctor? Mayo Clinic has some information on the ESR and SED rate tests on their website here: http://www.mayoclinic.org/tests-procedures/sed-rate/home/ovc-20207006.

I don’t have any medical training or background but I think it’s just a test to help the doctor monitor or check the progress of an inflammatory disease. Hopefully some other Connect members can respond to provide some additional information.

John

Hi @poppy73. MP is a rare condition/auto immune disease. Just speaking from personal experience, the radiologist that read my CT Scan was kind of “excited” because he had never seen an actual case, he had just read about. Knowing that this condition has a name was really helpful to me. That meant it probably had a treatment. The first thing my doctors did was put me on Prednisone for 3 months. That helped with reducing the inflammation. I had a few side effects, but nothing I couldn’t handle. The next thing I did was change my diet. I use what’s called the FODMAP diet. http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ That was a great guide how to start eating again. Then little by little I could try some of the foods on the “no” list. Although it says it’s for ibs, it does work for MP, as well. I feel very fortunate that my MP was caught fairly early. What I deal with now are occasional flare-ups, but not very often. I was diagnosed in May of 2016. I have discussed with my doctors that I thought I was predisposed to this condition because my dad had Crohn’s disease and my mom had Non-Hodgkin’s Lymphoma. So this being an inflammation of the lymph nodes in the messentary connected to the intestines seemed to be a perfect storm. We are lucky because the messenatry is getting a lot of attention and research. It was discovered by a Dr. in Ireland that the messentary is not just a bridge between from the intestine, but an organ unto itself. So that will help discover why some people get this and how better to treat it.
I hope this “dissertation” has helped you a little bit. There is another support group for MP and SM on Facebook if you are interested in being on more than one site.
Take Care,
bertbiz

I hope it will let me post.

It does help. It is hard to apply old hard medical information.I about dropped my tablet when I looked up the term “Messentric Panniculitis ” . The information is scary and brief .Have you found the medical community to be accepting and helpful ?

I have felt like people just want to keep passing me to the next person ….

@poppy73

It does help. It is hard to apply old hard medical information.I about dropped my tablet when I looked up the term “Messentric Panniculitis ” . The information is scary and brief .Have you found the medical community to be accepting and helpful ?

I have felt like people just want to keep passing me to the next person ….

Jump to this post

I’ve been lucky with my doctors. They seem to know a lot about it and are great listeners when I have questions or concerns. I’m in Minneapolis and am using the Park Nicollet system.

@poppy73

It does help. It is hard to apply old hard medical information.I about dropped my tablet when I looked up the term “Messentric Panniculitis ” . The information is scary and brief .Have you found the medical community to be accepting and helpful ?

I have felt like people just want to keep passing me to the next person ….

Jump to this post

I have Group Heath through the State.I have had a high turnover in doctors,but maybe something new isn’t the worst thing.Where have you found out some of the latest research?

Hello @poppy73,

I’d like to add my welcome, and thank you so much for joining us here on Mayo Clinic Connect. I see that @bertbiz has given you some excellent information, and I hope @billymac65 @danrofohio @vdouglas @mardellepoff @billindc @bakb @snoopdog @dennisl27 @denia @doron @croller68 @gmeg and other members will also return to share their insights.

I think you may also find this resource helpful:
http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/home/ovc-20322158

I also encourage you to read through past posts in this discussion; they are incredibly informative.

While we wait for others to join in, what questions in particular do you have about MP?

@poppy73

It does help. It is hard to apply old hard medical information.I about dropped my tablet when I looked up the term “Messentric Panniculitis ” . The information is scary and brief .Have you found the medical community to be accepting and helpful ?

I have felt like people just want to keep passing me to the next person ….

Jump to this post

Google has a lot of information, so does the support group on Facebook. https://www.facebook.com/groups/509021492520535/ It is a closed group, so you have to ask to join. I’m on both this one and that one. Really great information. The other thing I wanted to mention, exercise. I walk every day about two miles. It keeps things moving, if you know what I mean…

@poppy73

It does help. It is hard to apply old hard medical information.I about dropped my tablet when I looked up the term “Messentric Panniculitis ” . The information is scary and brief .Have you found the medical community to be accepting and helpful ?

I have felt like people just want to keep passing me to the next person ….

Jump to this post

Hi @berbitz – the link above is broken but they just setup a new website and it makes it a lot easier for people who are not on Facebook. Here’s the link to the group which now has 501c3 status – http://solutions2pnpd.com/. You can also just go to the search at the top of the Facebook screen and type the groups name – Solutions to Peripheral Neuropathy Pain & Discomfort. I also belong to the group and the protocol has reduced the numbness in my legs – used to be just below the knees in both legs and now it’s just above the ankles. I’m happy if that is my new norm because it means it’s not progressing like the neurologist said it was going to do.

Exercise definitely helps – just have to be careful not to overdo it.

John

@poppy73

It does help. It is hard to apply old hard medical information.I about dropped my tablet when I looked up the term “Messentric Panniculitis ” . The information is scary and brief .Have you found the medical community to be accepting and helpful ?

I have felt like people just want to keep passing me to the next person ….

Jump to this post

So glad to hear you’re new norm is better. I agree, you can’t overdo the exercise. For me, walking is plenty.

@kanaazpereira

Hello @poppy73,

I’d like to add my welcome, and thank you so much for joining us here on Mayo Clinic Connect. I see that @bertbiz has given you some excellent information, and I hope @billymac65 @danrofohio @vdouglas @mardellepoff @billindc @bakb @snoopdog @dennisl27 @denia @doron @croller68 @gmeg and other members will also return to share their insights.

I think you may also find this resource helpful:
http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/home/ovc-20322158

I also encourage you to read through past posts in this discussion; they are incredibly informative.

While we wait for others to join in, what questions in particular do you have about MP?

Jump to this post

Ok the site isn’t working at all from my ipad, let see if it will work from a alien ware : )

Thank you for welcoming me ! I am glad to be here. I am very happy with all the resources everyone is sharing with
me. I am taking notes.

I do have some questions.. will the doctors have to do a biopsy to diagnose this? Is there any limit to the organs this disease can
affect?