Mesenteric Panniculitis or Sclerosing Mesenteritis

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~

Welcome to Connect @retrebotic.
I see you've already met @mjg1160. Allow me to also introduce you to @bertbiz @billindc @mardellepoff @billymac65 and the others sharing here. Someone from @lisas444's group may be able to recommend a Mesenteric Panniculitis specialist in Los Angeles. @billindc was able to find a specialist in DC who coordinated his care with specialists here at Mayo Clinic.

You're wise to plan ahead and prepare questions for your appointment with your husband's GP. What questions have you thought of so far?

Thank you Mjg1160! I think diet will make a difference, thank you for the recommendation. Already I have him eating all organic. He does have a reaction to some bread products (he breaks out in hives) and milk products. I read the right diet can help with inflammation. Hopefully I can get him to agree.

Colleen, once we get the blood work back we will know more. I want my husband tested for allergies. Then I plan on asking his primary doctor if he has any experience with this?I will ask if this can be an infection in the area ( I read that is sometimes the case)? I plan on asking if a biopsy is recommended (I would feel better if it was biopsied)? I plan on asking if he has a colleague who is a rheumatologist that has knowledge or specializes in this? I plan on asking the rheumatologist if there is a holistic approach to this, before taking steroids since he is experiencing no pain? Will tumeric help rather then a steroid? Also is this a progressive disease that leads to major problems later, or is it a disease that is in and out of remission?

I did find two doctors in Los Angeles who list having experience but I'm concerned that they don't really, I of course will call. Also I have a rheumologist I really like ( I test high for RA, but no rheumatoid so I check in with him once a year) I will see if he has knowledge of this.

Great questions RT! I bet some of the MP people here can share their experiences with some of things you're asking about, like biopsies, steriods, disease progression and rheumatologists.

Hi i was diagnosed 6 months ago , Gotten nowhere after seeing multiple doctors, who don't know what to do. any recommendation for a doc in Houston tx ?

Welcome @txbear. Your story of dealing with doctors who are not familiar with MP sounds similar to many others sharing in this discussion. I hope someone here has knowledge of a specialist in Houston.
Should you wish a second opinion, please contact Mayo Clinic here: http://mayocl.in/1mtmR63