Mesenteric Panniculitis or Sclerosing Mesenteritis

Thank you, @johnbishop!

You bet! I'll let everyone know how it goes.

Hello @ebaker8, Welcome to Mayo Clinic Connect. How are you doing? I hope you are only having mild symptoms.

Can you tell us a little bit about your situation and symptoms if you can and general geo location. This condition is not very common as you may have already become aware and the number of Gastroenterologist familiar with it are limited. I have been to the Mayo Clinic in Rochester, Mn. They are familiar with this disease and can cut to the chase in regard to diagnosis. That is my recommendation. But everyone's situation is different. @jamienolson and @oldkarl, gave good information and a link to call and you may have already done that.

I wish you well with this, please let us know how you are doing.
Von

Hello @poppy73, Welcome to Mayo Clinic Connect. I hope you are doing as well as can be with this illness.

When my symptoms were bad I certainly didn't hesitate to ask for something to help with the pain so that I could remain active. As far as foods I was limited to oatmeal, white rice and liquids when it was really bad, then mostly soft foods. My goal at the time was to avoid digestive irritation and bloating which put pressure against the inflamed Mesentery.

In one of your post you inquired about biopsy diagnosis. At the moment I don't have access to the posts that you received in response to that question but I support the response that a biopsy is not necessarily required. It depends on the conditions of your diagnosis. I was also diagnosed by CT history over two years, without a biopsy.

Keep us posted how you are doing and best wishes for good health.

Hello @lockedavid and Welcome. I have also been to the Rochester Mayo Clinic. If I can help with Hotels, transportation and how to get around let me know. I'm not an expert but have been there. Maybe you have too.

Best wishes and let me know

I am interested in treatment for Mesenteric Panniculitis and hearing outcomes. A family member has this and we are very concerned.

Hello @citizenal,

Welcome to Connect. You posted your message successfully, and we're so glad you joined this incredibly informative group, where you will find many Connect members who share the same diagnosis. I encourage you to read through some of the older posts, and I'm also tagging @billymac65 @danrofohio @vdouglas @mardellepoff @billindc @bertbiz @bakb @snoopdog @dennisl27 @denia @doron @croller68 @gmeg, all of whom have been coping with mesenteric panniculitis (MP), or have loved ones with MP; I’m confident they will share their insights and have more information that might help you.

@citizenal, may I ask if you could share a few more details? Mesenteric Panniculitis is often asymptomatic; did you have any significant symptoms that led to the diagnosis?

Hello @katalinadrnnp, Welcome to Mayo Clinic Connect. Sorry your family member has to deal with this and the same for you and the other family members. The Mayo Clinic is one of the leading institutions familiar with this disease.

I want you to know that I am not a Doctor and I have not had any medical training. I have mesenteric panniculitis, and what I have to offer you is based upon my personal experience. The treatment for mesenteric panniculitis (MP for short) varies depending upon the location and the extent of the inflammation, and the symptoms.

The most important part of the treatment, in my opinion, is having a Physician who has the knowledge and training to know what to look for when evaluating the CT scan. A Physician who has the knowledge to proceed with meaningful test which they determine are necessary and to prescribe medications that have proven to be of some benefit. Frequently medications are prescribed that treat the symptoms and the inflammation. This "may" include pain medication along with a synthetic corticosteroid, Prednisone. The following link will take you to a site that gives very good information. My Doctor at the Mayo Clinic referred me to this study: <https://rarediseases.org/rare-diseases/mesenteric-panniculitis/&gt;
Cut and paste the above link into your address bar on your browser. Let me know if this is a problem.

I hope your family member is doing well at this time. I hope their symptoms are manageable. Do you mind if I ask what information is currently known or been told by the treating Physician? Can you tell us a little about what motivated your family member to seek medical assistance and how the diagnosis was made?

Best wishes to all of you, awaiting your response and further questions.

@katalinadrnnp, The link I sent you in my response didn't copy or paste correctly. Please try the one below.
https://rarediseases.org/rare-diseases/mesenteric-panniculitis/

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?