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Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: Dec 4 5:59am | Replies (1518)

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@jaimeworth89

Hello Everyone!

I was just diagnosed with Mesenteric Panniculitis last week. I had been having abdominal pain also with other symptoms the past 8 weeks that had been worseing over time. I had gone to my PCP and also my G.I. and I didn't feel they were listening to me. They kept talking about my acid reflux even though mine has been well controlled for several years now. I ended up going to the ER and had a CT scan which confirmed the diagnosis. I have since showed the findings to my GI doctor, and he is now taking things more seriously. I'm still pending the results of my blood work that's testing my inflammatory markers. Currently my doctor wants to wait the next 4-6 weeks to see if it will magcially go away on it's own. Will repeat the CT scan at that time, and will most likely do a biopsy. I've been inm so much pain and I'm hardly eating right now. I have lost 10 lbs in a little under a week. Don't get me wrong the wightloss is a good thing, but not in this scenario. My GI wants to hold off on steroids for the time being and has given me Tramadol, Librax, and Hyoscyamine Sulfate to see if it will help with the abdominal pain. A little back story on me, I have Celiacs Disease and my mother was recently diagnosed with RA. From what I've read, people with auto immune disorders in their family can mean you have a higher liklihood of contracting MP. I feel like I need to vent since I'm pretty worried. Based on what I've described, does this sound like a good medical plan for the illness or should I seek a second opinion with another doctor? I'm only 29, and not sure how many other people in my age group have been doagnosed with this.

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Replies to "Hello Everyone! I was just diagnosed with Mesenteric Panniculitis last week. I had been having abdominal..."

Hi Jaime,
I want to say welcome, but I understand how frustrated you must be. We all do. In my experience, steroids (though I hate the side effects) seem to help with the symptoms of MP. I have also been taking Tamoxifen alongside the Prednisone. I think once most people reach remission, they don't fall back out. I'm one of those 'other' cases who has fallen out of remission and have been battling symptoms for over a year now. My GI is weaning me off of Prednisone and if my symptoms persist (I feel like I am relapsing since weaning down with all typical symptoms returning....), we will be looking at immuno-suppressant medications. It's frustrating that there seems to be no further advances to help us! Through this site (and I'm sorry that I have forgotten who wrote the post!), I read a great book on how to deal with chronic illness called "How to be Sick" by Toni Bernhard. To answer your question about a second opinion, I have discovered that most people in the medical field don't know anything about this disease. I can tell you that from my experience, MP does not go away. I ended up being diagnosed through surgical biopsy, only to rule out lymphoma because my inflammations grew during the week that I was hospitalised. To answer your other question regarding autoimmune diseases, yes I blame my mother (she has ITP) entirely lol!! I also have hypothyroidism and typically welcome weight loss, but as you stated, not in this way. I hope this helps....

HI there,

I don't know if my reply was sent because I wasn't logged in, but here it is again just in case:

Hi there,

I had acid refux for years and then got the auto immune version of the MP. I suffered tremendously until I started the Paleo Auto immune protocol diet and then started taking supplements for auto immune as recommended by Chris Kresser (http://my.chriskresser.com/the-supplement-guide/). The probiotic recommended is no longer available, but Dr. Mark Hyman from the cleveland clinic has some recommendations. Initially, I added ginger root extract, and grapefruit seed extract. I am a western medicine kind of guy, but didn't want to take all the steroids that my doctors recommended. Not only did my pain associated with Pannicultis go away, I also no longer had acid reflux after about 7 years or so. I now cheat regularly until I have signs that I need to go back on the diet, but I was diligent for 6 weeks, and then slowly added foods to see what affects me. I also had high triglycerides, and elevated liver enzymes and inflammation markers. All of these issues resolved themselves with the diet. Good luck and stay positive.

take care, Doron

Can’t impress on you to take this on aggressively and find a specialist. See my post about contacting Dr Alexander or Dr Pardi at Mayo Clinic, Rochester, MN