MayoClinic.org
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
I’m going to try a third GI doc in DC and if concerns aren’t addressed, book an appointment with Darrell Pardi up at Mayo in Rochester. Dr. Pardi looks to be North America’s thought leader on MP. My GI doctor here is of the opinion that if it doesn’t look like lymphoma, go home and don’t worry. Take some Zofran and call him if I need prednisone. I think they underestimate the discomfort, bloating, acute pain, etc. It’s simply not a very well understood disease and I think most MDs are frustrated as well and probably do not want to admit they are just a little bit stumped. I think Darrell Pardi is the man to see if you want the final word.
Thank you, @billindc . I guess we are all trying to find our way through this.
Bill in dc – you may want to check ahead of time if pardi is seeing any Sm/mp patients right now or at least new ones. We have a private group of 260 members (ages range 2-80) with sm/mp now and a handful have gone for appts at mayo mn thinking they were having appts with both Drs. Pardi and Schaffner and they didn’t and saw others. Not sure if that’s a temporary thing or not????? Or what the reasoning was???? Or if they misunderstood on who they were seeing, but all lately thought they had appts with them and then didn’t. Maybe check ahead of time??? Just some thoughts. 🙂 we have a handful of members in the dc area.
Lisa Daughter w/SM diag. Age 14
If you or others are interested in the private group as well, you can pm me for info.
I am so sorry to hear of your husband’s suffering. I am in Silver Spring, so not too far from you. Outside of a fellow in Chicago, Dr. Pardi that I mentioned in my post is our best bet. Nothing available at Johns Hopkins, which is where I looked first. I’ve gone through the same ER trips, 3 times in 10 months until they decided it was not diverticulitis or appendicitis. I understand what you have been through. Even experienced and noteworthy GI practitioners in our area have only seen 1 or 2 MP cases in their careers. Please stay in touch. ~Bill
Wow, that’s good information, much appreciated!
@billindc I believe you are already in contact with a physician at Mayo Clinic MN. However, if either you, @mardellepoff or anyone else would like the contact numbers please see the information on this page: http://mayocl.in/1mtmR63
@lisa444, so excited to read that you and Mac are getting ready to go home. Safe travels.
@bertbiz how are you doing? I wish you all the best with your appointment on Monday. Keep us posted.
I will let you know, Colleen. Glucose tests are looking good, so no more of those until they take me off the Prednisone.
Roberta
Thank you!
Hi Colleen,
I am pleased to report that my GI Appt. went very well yesterday. I viewed my CT Scan and there was no evidence of growths, lesions, ulcers, cancer or tears anywhere. The Dr. told me that managing my MP would be the way to go. I will continue to take prednisone and start to taper off next week taking a total of 2 months to be completely done. We will assess the pain, if it comes back. I will have a second CT Scan in September to compare to the baseline one I had a couple of weeks ago. She wants me to think of this as an IBS type of thing managing “flare ups” with prednisone periodically if necessary. A biopsy wasn’t indicated, either. So all in all, it was pretty good news. I am feeling better. My pain has been a 1 or 2 instead of an 8 or 9. I was very happy. I will also be doing some holistic things, such as Reiki, meditation and Yoga. I hope this is helpful to others. It was nice to have some hope…
Great news @bertbiz. Speaking of prednisone, you may be interested in the discussion that @johnbishop and @charlena are having about tapering off the drug and managing pain. https://connect.mayoclinic.org/discussion/i-was-diagnosed-with-pmr-2-12-years-ago-steroids-didnt-help/ John explains his journey in detail in terms of time and dosage.
Does anyone in Los Angeles know of a doctor that specializes in this? My husband, 49, had a CT scan and MP was found. It was indicated as 8 cm in size. Also diverticulitis was found. No other tumors or problems. He is in zero pain, just some occasional bloating based on what he eats. We haven’t seen his general practioner yet about the results but I want to plan ahead. Also, does anyone think the area should be biopsied or can this cause more problems?
I recently found I have the same exact diagnosis. No pain and bloating which was horrible and uncomfortable. My doctor gave me prednisone and it actually made me feel worse and had all kinds of side effects. I met someone who also has the same diagnosis and she went on a Whole Food Plant Based Diet and looks great. I have been on this diet for three weeks and have no more bloating or pain. If you look up “Forks Over Knives” you can read up on it. This worked for me and I am just offering a suggestion that may be easy to get relief. I love my doctor but went to a few others and they really don’t know much about MP.
Best of luck to your husband~