Mesenteric Panniculitis or Sclerosing Mesenteritis

I just got my diagnosis of MP on Sunday. The ER doc knew nothing as with my PC. My gastro is engaged but has only seem related issues.

I signed up for connect but I cannot find this group to put in my profile. I'm puzzled? I'm surprised it is allowing me to post. Is there something I'm doing wrong?

my name is iyad i was I was diagnosed with mesenteric panniculitis
can any one help me to find adoctor Specialist in this disease

ask places like Sloan Kettering, or Mayo, or Cleveland Clinic, etc., who of their graduates might possible have exterience in this. Talk to their alumni offices. Also ask any med schools in your area. Also, read the list of writers of materials at NORD, or NCBI, or NIH who have written about the stuff in the last ten years. mesenteric panniculitis. I did not even know such a thing existed, but it sounds like a pain in the behind.

Hello @ebaker8. Welcome to Mayo Clinic Connect!

I would encourage you to call Mayo Clinic http://mayocl.in/1mtmR63 for more specific answers to your questions. We do have physicians that specialize in this and you can ask the scheduling desk about them specifically.

I also encourage you to read through past posts in this discussion; they are incredibly informative. What questions in particular do you have about MP?

Well its official , I am diagnosed. I guess it is good to know what is wrong. I am suppose to keep at food journal to see if certain foods bother me.
Does anyone have foods that seem to make their pain worse?

Don't know whether it is Angel's Food Cake or Devil's food cake. Or just remembering what I left behind.

I started with the Auto immune protocol and added food back. My biggest issues are gluten, sugar, dairy, corn, tomatoes, nuts, alcohol (especially beer) in excess. Everyone is different, so auto immune protocol is a good start. You only need to be very strict for about 6 weeks before you start adding food back in. I would also look at taking supplements, especially probiotics. I like the supplements recommended by Chris Kresser. Good luck!

I was diagnosed with sclerosing mesenteritis earlier this year. I found this forum recently and I have read every single message y’all have posted here! Getting a diagnosis after seventeen years of mysterious symptoms was a huge relief (as many of you know!). Finding this group, though, is even more of a relief and such a huge blessing! I’m so grateful for everything you have shared. There is so much priceless information here ... not to mention a feeling of relief in not being alone in this.

For the benefit of others, I’ll share a few details of my story, which is very similar to what others have shared already. I hope it is helpful to someone.

Summary:
– 47 year old male living in Illinois
– Symptomatic episodically since 2000
– Symptomatic continuously since 2014
– Symptoms: abdominal pain (primarily upper left quad and lower left back, at times severe), night waking insomnia, bloating, painfully rigid abdomen (especially around the upper abdomen and at night), nausea, vomiting.
– Many GI and GP doctors (in CA and IL) stumped after many, many tests came back normal
– Initially, I lost a lot of weight since everything I ate seemed to make me sick (I’m 5’11” and was down to 130 lbs at one point)
– Diagnosed with MP by University of Chicago Medical Center’s (UCMC) Digestive Diseases Center in March (by CT scan)
– Biopsies of mesentery tissue and mesentery nodularity (enlarged lymph nodes) taken at University of Chicago’s Bernard A. Mitchell Hospital in May to rule out lymphoma.
– Surgeon observed inflammation, tissue necrosis, and sclerosing. Pathology was negative for lymphoma.
– Treatment with Prednisone and Tamoxifin started in May.
– Treatment stopped in July after no improvements were observed (and significant side effects experienced).
– UCMC then suggested, since I didn’t respond to treatment with Prednisone, that I travel to Mayo Clinic for further options
– I have a visit scheduled to Mayo Clinic’s Division of Gastroenterology and Hepatology in Rochester in October. Hopefully they can provide some additional treatment options.

There are a 4 things that have helped me stabilize my symptoms and reduce the occurrence of the most debilitating episodes over the last year:

1) Diet: I now eat primarily fatty red meat, grains, and dairy (which is pretty much exactly the opposite of what six GI/GP doctors in 2014 and 2015 recommended as a diet). I may be slowing moving toward a ketogenic diet. We’ll see. My former diet (vegetables, fish, and poultry only) now makes me very, very ill (and very quickly). Everyone is different and with MP/SM every dietary experiment is perilous (as many of you know from experience), but you have to find out what works for you. Just take it as slowly as possible. For me the Very Bad list includes: almost all vegetables (cooked or raw or even juiced), lean proteins, peanuts, seeds (and really anything dry and hard … like popcorn or granola), and any alcohol (I do miss my whiskey). I’m very fortunate and grateful that there are things I CAN eat. I know that many people are dealing with not being able to eat at all or having a feeding tube.

2) Sleep: I use a Medcline pillow to sleep with my torso angled up. I read that many of you have issues with different positions (I can’t imagine worsening pain with too much standing or sitting … that must be awful). For me, I’m unable to lay prone. Pain and a sort of tensing and rigidity in my abdomen start to grow shortly after laying down flat.

3) Sleep: Nighttime timed-release hyoscyamine (Symax Duotab) helps enormously for some reason. It is only recommended for short term use, but I’ve been taking it for well over a year now (and I understand many other people do as well). The only side effect for me seems to be blurry vision. One of my former GI doctors (in San Francisco) recommended it and it has been a life saver for me. If I stop taking it, I’m in agonizing pain within a few days.

4) Activity: Staying active, but doing it very gently, has helped enormously. Walking is good. Bicycling hurts. Golf has been good for me. Lifting and aggressive cardio are bad. Gentle yoga is good. “Yoga shred” (or whatever the current fitness yoga fad is called) is bad. Etc. Overall, walking is probably the best thing and helps the most.

The dietician at UCMC suggested the FODMAP diet, which many here have also suggested. I will be looking into that this week. I also noticed that many people here suggested the Paleo Autoimmune Protocol. That is new to me and I will definitely be reading more about it! Thank you.

Finally, one thing that helped me through the darkest months of this journey was Toni Bernhard’s book "How to Be Sick.” I highly recommend it for anyone dealing with long term, chronic illnesses … especially an illness as mysterious as the one we are experiencing.

My heart and my prayers go out to all of you who are suffering with this.
Locke

Hello David (@lockedavid),

Welcome to Mayo Connect! We are so glad you found us. Thank you for sharing your health story and some really good information as well. Since you mentioned you have an appointment at the Rochester Mayo Clinic Campus in October I thought you might be interested in some short YouTube videos that may help you get around the area.

Here is link for the playlist of Mayo Clinic video tours on YouTube, click the small bars at the upper left corner of the screen
to see the list of videos. It will start playing the main video. https://www.youtube.com/playlist?list=PLEAofwtIhjZJsyi7NCyKZzPzh__56H_AY

John

@lockedavid

I appreciate your post - your proactive approach to finding treatment for this rare condition is so commendable. If only all patients would be as active in seeking answers as you have been!
I wish you well as you go to Mayo, I understand they have some wonderful specialists who deal with this disorder.
Will you keep us updated as to your progress?

Teresa