← Return to Mesenteric Panniculitis or Sclerosing Mesenteritis

BillyMac65 (@billymac65)

Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: May 10 1:48pm | Replies (1490)

Comment receiving replies

Hi Lynn, I am so sorry you are having so much trouble finding a doctor. But that is why they call it the “practice” of medicine. The problem with MP and other diseases like it, is you have to turn into the best advocate for yourself. You have to INSIST on being seen. That’s what I had to do. I called on a Thursday and talked to the nurse practitioner and said “This is how it’s going to go…I’m going to be seen by a doctor tomorrow morning, have a CT Scan and have answers by the end of the day.” That’s exactly what happened. That’s when I got my diagnosis of MP. It is so rare, the radiologist that read my scan had never seen a case, just read about it. By the following week I was in the GI doctor’s office and was on prednisone by the end of that week. I can’t stress enough about becoming your own best advocate! Do your research, find out what the options are. If you don’t like the current doctor, find a different one. I sound a little soap-boxy, sorry. I also started on the FODMAP diet. I talk about that all the time. It was so helpful for me. I was able to eat and put back on the weight I had lost. I felt stronger and healthier. It’s a long road, as you know too well. I don’t get the whole “dermatologist’ thing. Stay strong. We are all here for you. It’s a great resource.


Jump to this post

Replies to "Hi Lynn, I am so sorry you are having so much trouble finding a doctor. But..."

Thanks Roberta. I agree 100% about being my best advocate. I’ve already had to, so many times over the last 7 years. I was originally diagnosed in NC, & at the point that my family practitioner (best Dr EVER, I miss him very much) referred me to Duke Univ. my job transferred me to GA. I literally had to start the whole process over. For the past few years I’ve taken the “just treat the symptoms & deal with the flare-ups” approach. I’m ready to get back to searching for answers though & so is my GI. Which is why this is so frustrating! I’m getting ready to take another swing at them now. As I mentioned, I was just doing some more fact finding, when I found this site. It’s AMAZING to have the support of people who “know”!! I’ve been reading previous posts. This place has restored some of my sanity!! I’m so glad I came across this!! Thanks again!!

I am at the very beginning of my diagnosis and am wondering if I should just begin with a doctor that is familiar with MP. I have been having excruciating pain in my right upper quadrant (no gall bladder) with diarrhea off and on, bloating, indigestion etc. They found the MP on a CT scan. I have an appt with gastro next week, but want to find someone in my area that is familiar with treating this. I live in Dallas, any suggestions?