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Mesenteric Panniculitis or Sclerosing Mesenteritis
Digestive Health | Last Active: Nov 6 8:25am | Replies (1517)Comment receiving replies
I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally diagnosed 11 years ago. I was having upper right abdominal pain and tightness. I had gallbladder test and colonoscopy to rule out issues there. It showed up on a CT scan. I was referred to a surgeon, who took biopsies to rule out cancer. After seeing several GI docs who admitted that they "were flying by the seat of their pants", I decided to be proactive. I would have a flare up once or twice a year. I was a 40 year old female and didn't seem to fit the mold of being a 60 year old male! haha. I took all of my CT scans with me to the mayo along with the surgical notes and biopsy results. I have had multiple CT scans since my original diagnosis. Parking at the Mayo was very easy, so was navigating the hospital. I dropped off all of my medical docs at my appointment time and they had me return a few hours later. I met with Dr. Pardi and he confirmed that I did have MP. He was optimistic that my CT scans had not changed much over the past 11 years. He said that he hadn't really met someone who has had it this long without it progressing. Knock on wood! He dictated a letter to me that I can give my local GI on what actions and medications I should try with flare ups and if they happen more frequently, I should return to see him. He was very nice and informative. My appointment was not rushed at all. Because I had so much of my medical docs, I only had to be seen that day. I wish you luck and if you have any other questions, please don't hesitate to ask.
Replies to "I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally..."
Actually, I have a question regarding what medications have been recommended for flare ups? I am having a horrible time getting off Prednisone. Each time I wean down, even just half a mg., I have been relapsing and have to begin all over again! So frustrating!
I am envious! Wish I could see him. I haven’t seen a knowledgeable Doctor since being diagnosed. I live far north in Canada and getting a recent CT just seems too much. My Doctor pretends I’m crazy and there is no such disease. 🤪😆
I don't have your diagnosis, but just spent 2 separate weeks at Mayo in Rochester this summer (just returned from second), and I have to agree. Originally my parents were coming with me, but couldn't at the last minute so I went by myself... well with my dog 🙂 . I was really scared, but it ended up being so easy. The scheduling person for my GI doc had all of my tests and consults set up. Once I parked, I never used my car all week. I stayed at the Kahler Inn and Suites, right on the campus and across the street from the Gonda Building, where the GI dept is. Radiology was at the building right across the street. I could literally walk out the door and be at my appointments in 10 - 15 minutes - no driving, no parking, no stress. Everyone was wonderful.
My dog kind of became the "therapy dog" for all the patients staying at the hotel (he is a very sweet, well behaved, senior dog). Whenever we'd go out for a walk, everyone would be happy to see him. One lady said "I'm happy now that I've seen Scooby". It was nice that the hotel was pet friendly and I could have him with me. There are so many beautiful little garden areas and fountains on the Mayo Campus, in the evening we would walk to one and just sit and relax. I called it my "spa vacation".
So, going back the second time was really easy! I would recommend it to anyone. I feel I've gotten a good start and some good information! Unfortunately, it doesn't seem the doctor I was assigned to understands my problems or knows how to treat them, so I am going to move to a center that has specialists in that area, but I loved my experience at Mayo!
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Thanks for sharing your good experience, @cconnors.