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!!
Interested in more discussions like this? Go to the Digestive Health Support Group.
It can be frustrating when your healthcare provider may not seem empathetic to your symptoms. Seeking a second opinion is always a wise choice, and if you would like to make an appointment at Mayo Clinic, you can use the following link: http://mayocl.in/1mtmR63.
Did your doctor explain what all he needs to rule out before he can make a firm diagnosis of MP?
I don’ t have a “like” button through my connection but I agree with the second opinion and Mayo appointment. With all due respect, was the doctor basing his decision on CT evidence and blood test results?Vdouglas
@kanaazpereira and @vdouglas Beat me to it. It’s always great to get a second opinion. You have to have a doctor that is going to listen carefully and thoughtfully to what you are going through. If he/she doesn’t, time to find another doctor.
Happy Thanksgiving to everyone! I sincerely hope that all is well today and that everyone is feeling great! Feeling blessed and happy to be with family and friends! May the Lord Bless you and keep you! May He shine his light upon you and give you peace. Now and forever more !!
My husband was recently diagnosed with the mesenteric panniculitis. We have had many hospital trips. Many medications, even antibiotics because they said they do not know how to treat it since they do not know the cause. Our doctors say they have only saw 2-3 cases of this. One doctor said he sent a person to see Dr. Pardi but they did not get any relief from him. We were told maybe they would go in and trim some of the fat tissue and see if this would help. This has been going on for a little over a yr now and just keeps lingering. From what I am reading no one is finding any real answers.
Prednisone and the FODMAP diet helped me a lot.
Hi @amydSorry to hear about your Husband’s (and yours) struggle with this. Did he have the surgery? if you don’t mind saying. Is his worst symptom pain?I don’t mean to pry but I am trying to understand this disease a little better myself. When I had the pain it was under my ribs in the back on the right side. It would go around to the front right side to the waist at times. I was unable to get off the couch for about a week when it first hit, then it tapered to bouts of pain and now all but gone. This started in November of 2014 and I have just recently become asymptomatic, no more pain under the ribs. I have taken Tramadol 50 mg and no other medication. I still need to watch what I eat and try to stay regular or there will be discomfort, but it will not make me sick like it did early on.I sincerely hope you and your husband find the answers you are looking for and his symptoms improve as well. I certainly wouldn’t want to give false hope but there is always hope.@vdouglas
Hello @bertbizDid you have issues with the prednisone?@vdouglas
He has not had the surgery yet. We are still trying several medications which most are not working. He has severe pain on both sides of his stomach which hurts if you even apply pressure. His back hurts alot as well. He has nausea at times, spasms and will dbl over in pain. The doctir told him to eat whatever because they dont know the cause but he does have diverticulitis so we are careful with that. Thank you for your reply. This disease is very frustrating.
He has been on prednisone several times then goes back to same everytime. Have not heard of the Fodmap diet. Doctor said he could eat whatever because they didnt think it was food related. We are very frustrated.