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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
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Hello, I was diagnosed with mesenteric panniculitis just a few days ago at the ER. I am looking for forums or groups with others that have the same diagnosis and information to share. I had a follow up today with my primary doctor and I am pretty sure he Googled it right before he walked into the room because he said exactly the same words I read when I googled it a couple of days ago. He didn't seem too concerned and said to take Tylenol for pain and we would do a follow up CT scan in 3 months. I finally convinced him to refer me to a gastro doctor at OHSU. But that will take a few weeks. I am not even sure how they can know it is MP without any further testing or biopsy? Any suggestions of where I can find out more info would be wonderful!
Google is a great resource. I insisted on a CT Scan and that's when I was diagnosed with MP. The radiologist that read my scans said he had only heard of MP, but had never seen an actual case. Seeing a GI doctor is the best way to get the treatment you need by a specialist. You don't necessarily need a biopsy. I haven't had one, my scans were very clear. Check out the FODMAP diet. In the meantime, while waiting to see the GI doc, eat things like pancakes (with white flour), soup, white rice, banana smoothies made with Kefir. Cut back on vegetables. That's what I did to give my intestines a break. I took Tylenol for pain when needed. I was told never to use Ibuprofen again. I have had a second set of scans and the inflammation is minimal. I've been trying to reincorporate vegetables...slowly. At the beginning when I was diagnosed, I lost 8 pounds. Now I've gained that back and feel much better. I just want to qualify this by saying, this is what worked for me. This is what was suggested by my GI doc. I am scheduled to go in for another CT Scan in 6 months. If that is clear, I don't have to go in again. I was told to think of this as something like IBS. There may be flare-ups occasionally. I hope this helps you.
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1 ReactionWelcome to Connect, @winnah. You've come to right place to find people with the same diagnosis (mesenteric panniculitis) to share information and experiences with. As you will see as you read back through the messages posted in this forum, it is important to find a doctor experienced in treating MP.
I'm tagging fellow members @bertbiz @mardellepoff @billindc @retrebotic @txbear @mjg1160 @billymac65 and @miker46 who can share with you, starting with how they found doctors and what tests they had to confirm that they had MP.
Winnah, are you able to research the gastro doctor at OHSU to whom you've been referred?
Colleen, I wrote Winnah just a few minutes ago.
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1 ReactionThank you. I think we must've been writing at the same time 🙂
Thanks for the Info, especially the food ideas. I have been trying to eat light, small meals. I seem to feel better if I do not eat too much at one time. I have also added in fresh ginger tea and a mixture of turmeric and honey for inflammation.
Those are all good things. I add turmeric when I cook chicken. Smaller meals work better for me, too.
@colleenyoung I will not know what Dr my referral will go to for a week or two. I did read the specialties for the 18 Gastro Dr's at OHSU and of course MP wasn't listed. I will call on Monday and do a little research on my own. Oregon Health and Science University is the biggest hospital here and if there was a specialist it would be there. The downside is that a referral takes a long time and it can be months before you get an appointment. I am hoping that since it's something they do not see a lot that they might get me in sooner. I am pushing for a biopsy since I had uterine cancer 3 years ago. I read that up to 30% of the time there can be underlying cancer or cancer spread for some where else. I have had abdominal ct scans every 6 months for 2 and a half years up until Dec of last year when I was released from follow ups. Nothing has ever shown up on my ct scans until now.
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1 ReactionSounds like you are being very proactive. You are your best advocate. Good for you. Please let us know what you find out.
My husband was diagnosed with MP in May of this year. His PCP said it was a "controversial" diagnosis, and his GI was not responsive. Since we live an hour from both DC and Baltimore, I started trying to find a doctor who was familiar with MP. Finally found one, but our insurance changed and this doc was no longer in network. Needless to say, the moral of the story, do not give up. Keep pushing. This is a REAL condition, and your pain is very real. What works for one person, may not work for the next person, so, you need to keep trying. I have found that raw fruits and vegetables cause my husband discomfort, so he eats primarily cooked fruits and veges. Basically, looking for things that are easier to digest works for him. Good luck, and don't give up!
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