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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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@jimbodc I am not sure where you are located but there are 3 Mayo Clinics.. Jacksonville, FL, Rochester, MN, Scottsdale, AZ... also look at Cleveland Clinic for excellent GI Care.. Boston General and Johns Hopkins are not as well known to me.. but they have great reputations..
My husband never really experienced pain, his started with bloating in his upper abdomen for over a year & the bloating gradually got worse which the pressure started effecting his breathing!! Good luck , Mayo was the only Drs that could figure out what was wrong!!! THEY ARE WONDERFUL
Thank you...my pain is probably better described as discomfort. I am from near Toronto, ontario, so a long way from the Mayo Clinic....I will see what we know up here and go from there....do you think diet has anything to do with it?
Morning Nancy! I am from Fort McMurray. We have a few of us in Canada. Many of us do watch our diets carefully. Some with “formal “ diets others not do much. Through elimination I have discovered I cannot eat onions or corn in any form, no seafood, alcohol, extreme spices and have found small meals and less red meat seems to work best. But none of us are exactly the same. Biggest influences -seems to affect most is -less stress and more rest. Stay well and think positive❤️
And here comes another Canadian lol....I'm from Ontario....staying away from stress is a must for me as well as lots of rest! Another factor for me is weather, specifically cold, damp weather. As for diet, as with @pcfromfm, spicy food is problematic and smaller snacks work better for me than large meals. I hope this helps1
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1 ReactionThanks to you and kimh! I have not really found anything yet but justnstarted writing it down. Not enough sleep may be something. I am a terrible sleeper, so will keep my eye on that too. I don’t eat spicy food, so no problem there! Thanks fir your help! Stay safe..
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2 ReactionsYou as well @nancykeenan! Also, for meds. I have been on Prednisone (for 3 years now, unfortunately), Azathioprine, Tamoxifen and Methotrexate. Your GI may want to start you on a Prednisone dose. The side effects are ugly (weight gain, facial hair, anger management lol), but it may help you! Good luck!
Hello - I am curious to know if anyone here that has been diagnosed with Mesenteric Panniculitis also has a skin lesion problem. I have had the lesions on arms, legs, across my upper back and a couple on my stomach, with scarring. If so, would the same medications address this issue??? Thanks to all for sharing, I have learned quite a bit already!
Sorry no lesions. Could the lesions be a sign of something else?
Thank you Ken! I just verified with my insurance and they cover Mayo as well as Johns Hopkins. Been reading and Mayo seems to be the best but both FL and MN are a hike from where I am in DC. I am going to at least see if they can review my scans remotely as I am nervous having anyone cut into me for a biopsy that has no experience with this.