Connect
← Return to Mesenteric Panniculitis or Sclerosing Mesenteritis
Discussion
Mesenteric Panniculitis or Sclerosing Mesenteritis
Digestive Health | Last Active: Dec 4 5:59am | Replies (1518)Comment receiving replies
Hello there, I too have MP without an underlying cause. It was discovered on a CT scan when I went to the ER for a migraine. That was 5 years ago and for a while, I felt lucky as my symptoms were not too frequent. This has changed. Since my diagnosis, I have had 4 abdominal surgeries and multiple flare-ups of pancreatitis. All gallbladder tests were normal, but this year they took out my gallbladder anyway. It was full of scar tissue and polyps (I still get pancreatitis, though I drink no alcohol and rarely eat processed food). The most obvious symptom of MP is the fact that my belly will go from flat to looking like I'm 9 months pregnant within an hour and be hard as a rock. Not a good look for a 62 year old woman.
I noticed someone on this board mentioned "lumps". I'm now getting small tumors in my leg, arm, on my rib, etc. MRI's have been inconclusive, and I it's been suggested I get them removed and biopsied. I'm reluctant.
No one in my area knows ANYTHING about this disease even though I live 4 miles from the famed PennState Hershey Med Ctr, though their radiologist was the one who diagnosed the disease.I have seen 6 different doctors to no avail.
As many of you know, it's difficult to feel so ill, have no physician to contact with the knowledge to treat and to be in pain. Thank you all for sharing. Has anyone else had Lyme before their diagnosis?
Replies to "Hello there, I too have MP without an underlying cause. It was discovered on a CT..."
Hi @mbbarrett , I was diagnosed with MP last year. Like @vdouglas , I got to the point of not eating because everything I ate made me feel worse. I was on cooked oatmeal and a small container of Activia. I found a GI doctor in my area that had a few patients with MP. She put me on Meloxicam to help with the inflammation. It took several months for it to work, but helps quite a bit. She started me off on a big dose of prednisone to knock down the inflammation, then the Meloxicam. She said it has fewer side effects than the prednisone.
I still get flare ups when I am not careful with my diet, but the Meloxicam has really helped me. I start taking it every other day or every two days when I start feeling better. For me, diet is everything! Things that I could eat last year, I can't even put in my mouth. If I drink too much water...it goes straight to the edema in the messentary, I have also found that exercise helps too. Especially taking Meloxicam, you need to keep things moving! This is a good place to talk to others that know exactly how you feel! Welcome to the group!
Connect
Hello @mbbarrett, Welcome to the Mayo Clinic Connect. Sorry you are having to deal with so much that has to do with this illness. 4 surgeries and having your Gallbladder removed is a lot for a person to go through. I do hope things are getting better for you.
I don't remember who mentioned the "lumps" but I will do a little searching and see if I can find out what it was about. When I was experiencing symptoms my belly would swell also. I was also very sick so I basically quit eating then went to rice and cooked oatmeal. I stayed with a bland, soft diet for a while and didn't have any issues. When I would get brave and eat a big meal that was difficult to digest I would get the bloating again. Anyway, diet definitely helped me to a notable degree.
Like you, I had the same feeling that I was not getting anywhere in regard to a knowledgeable diagnosis. I found out, with the help of some members of this forum, that the Mayo Clinic in Rochester had a Doctor and Staff that was familiar with diagnosing this illness. I would also recommend that to you. I know it could be very difficult but before you get to the point of feeling hopeless because you are not getting answers, that is where I would go.
Are the Doctors concerned about the Tumors you have developed?
Best wishes for your good health and try to stay positive no matter how difficult things seem.
@vdouglas