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
Interested in more discussions like this? Go to the Digestive Health Support Group.
I get some relief from complete stillness, not laying or sitting on left side, naproxen, and a dwindling supply of Vicodin. Hoping pain management doctors can help me.
Thank you. I was at the doctors today. Seems like things are «looking up». I found out today that she had previously referenced me to the wrong specialist. She referenced me to some sort of cancer department, and not a gastro specialist. They told her to do a stool test of me and get me an appointment with a gastro specialist. So that’s what she did. Can’t wait to meet and speak to a specialist that hopefully can help me out.
What you are writing at the end just made me have an epiphany. That explains everything. Why I’m rolling on the floor with abdominal pain after I try to do yoga or walk up a lot of stares. I just thought it was menstrual cramps, even though I didn’t have my period. Wow. I am blown away. I have a lot to think about now 😅
Hello @jarnold246. Is your doctor aware of the environmental exposure you have had? If not, this might be a good topic of conversation. I know how uncomfortable abdominal pain can be.
Have you found anything that helps ease the pain, either meds, exercise or a liquid/soft diet for several days with bed rest?
I have sent you a friend request on Facebook.
Welcome to Connect, @jnelson210. We look forward to getting to know you. What symptoms are you currently experiencing? How is your MP being managed?
I am a 58 year old female. For the past 3 months I have been experiencing chronic pain in the abdominal area (different places, upper and lower, front, back and both left and right sides). I have experienced these pains on and off for the past 3 years. I have had several C-Scans over the years. This time they compared the mesentery and also did blood work and came to the conclusion that I have MP. My GI has only had one patient with this so he is going to consult with others in order to find out possible treatments. I am also diabetic so that poses some issues with some of the recommended medications. I appreciate all the posts giving some idea of what this strange thing is.
I was told two weeks ago that a CT scan without contrast done in the ER when I was there for apparent food poisoning and dehydration showed Mesenteric Panniculitis. A radiology note recommended follow up testing. I have appointment with PCP in a few more weeks. Found this discussion when looking for more info on the subject. Trying not to get too overwhelmed, so I haven’t read all the posts here yet. The acute situation has subsided especially since finishing the round of flagyl. Still having an aversion to most foods and sporadic epigastric pain and abdominal tenderness. Bowels still not normal. Extremely fatigued but back to work. I have had a long personal and family history of various autoimmune-type symptoms and diagnoses. And looking back a lot of my various health issues that I have basically just “lived with” for my 55 years could possibly be related. I want to be proactive but not overreactive. Guess I may know more in a few weeks after further testing.
I have been experiencing pain in my abdominal area almost every day. I have been having about one or two good days a week for the past three months which means I am able to function almost normally. Usually the pain comes with swelling. Sometimes the swelling includes my whole abdominal area and sometimes there is hard knot area that may be the size of a baseball. It comes and goes in different areas.
Since I am new to this...since it deals with the fat cells, what happens if I lose weight? I am currently about 20 lbs over weight. Would losing weight help?
I have not been able to find any physician in the Houston area that knows anything about this. Does anyone know of anyone?
Some of my family is recommending that I go to the Mayo Clinic. How long does it usually take to get an appointment?
When I was first trying to get an appointment at Mayo here in Phoenix, the wait was about 3 months. But they said keep calling everyday to see if there was a cancellation or they could work me in and I got lucky. They got me in within 3 weeks. So don't give up
Hello everyone, recently diagnosed with MP. Went to ER with what I thought was just another kidney stone turns out it wasn't but it was MP. had several enlarged lymph nodes in the lining and severe pain. My family dr. has ran several test checking for autoimmune. The ANA came back positive, he ordered a colonoscopy to rule out any colon issues, all was clear there. So now back to drawing board waiting to see what other tests he wants to do. Can't seem to find out what has caused this. My paternal grandmother had multiple autoimmune diseases, I also have a cyst on my right kidney and have suffered from kidney stones for last 12 years. I have had mono twice in my life time. once at 13 and another time at age 22. Second time I was in bed for a solid week going and getting a shot everyday for the swelling in my throat and ears. I am looking for any information to help me cope with this condition. I have low grade fever, body aches (like flu), and the pain in my side. Steroids have helped with the swelling which has reduced pain. Still have occasional flare up of pain. I just want to feel normal.