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BillyMac65
@billymac65

Posts: 14
Joined: Dec 06, 2012

Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by @billymac65, Dec 6, 2012

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

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@lockedavid

I appreciate your post – your proactive approach to finding treatment for this rare condition is so commendable. If only all patients would be as active in seeking answers as you have been!
I wish you well as you go to Mayo, I understand they have some wonderful specialists who deal with this disorder.
Will you keep us updated as to your progress?

Teresa

@johnbishop

Hello David (@lockedavid),

Welcome to Mayo Connect! We are so glad you found us. Thank you for sharing your health story and some really good information as well. Since you mentioned you have an appointment at the Rochester Mayo Clinic Campus in October I thought you might be interested in some short YouTube videos that may help you get around the area.

Here is link for the playlist of Mayo Clinic video tours on YouTube, click the small bars at the upper left corner of the screen
to see the list of videos. It will start playing the main video.

John

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Thank you, @johnbishop!

@hopeful33250

@lockedavid

I appreciate your post – your proactive approach to finding treatment for this rare condition is so commendable. If only all patients would be as active in seeking answers as you have been!
I wish you well as you go to Mayo, I understand they have some wonderful specialists who deal with this disorder.
Will you keep us updated as to your progress?

Teresa

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

@ebaker8

my name is iyad i was I was diagnosed with mesenteric panniculitis
can any one help me to find adoctor Specialist in this disease

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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

@poppy73

Well its official , I am diagnosed. I guess it is good to know what is wrong. I am suppose to keep at food journal to see if certain foods bother me.
Does anyone have foods that seem to make their pain worse?

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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.

@hopeful33250

@lockedavid

I appreciate your post – your proactive approach to finding treatment for this rare condition is so commendable. If only all patients would be as active in seeking answers as you have been!
I wish you well as you go to Mayo, I understand they have some wonderful specialists who deal with this disorder.
Will you keep us updated as to your progress?

Teresa

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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.

@bertbiz

Hi @poppy73. MP is a rare condition/auto immune disease. Just speaking from personal experience, the radiologist that read my CT Scan was kind of “excited” because he had never seen an actual case, he had just read about. Knowing that this condition has a name was really helpful to me. That meant it probably had a treatment. The first thing my doctors did was put me on Prednisone for 3 months. That helped with reducing the inflammation. I had a few side effects, but nothing I couldn’t handle. The next thing I did was change my diet. I use what’s called the FODMAP diet. http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ That was a great guide how to start eating again. Then little by little I could try some of the foods on the “no” list. Although it says it’s for ibs, it does work for MP, as well. I feel very fortunate that my MP was caught fairly early. What I deal with now are occasional flare-ups, but not very often. I was diagnosed in May of 2016. I have discussed with my doctors that I thought I was predisposed to this condition because my dad had Crohn’s disease and my mom had Non-Hodgkin’s Lymphoma. So this being an inflammation of the lymph nodes in the messentary connected to the intestines seemed to be a perfect storm. We are lucky because the messenatry is getting a lot of attention and research. It was discovered by a Dr. in Ireland that the messentary is not just a bridge between from the intestine, but an organ unto itself. So that will help discover why some people get this and how better to treat it.
I hope this “dissertation” has helped you a little bit. There is another support group for MP and SM on Facebook if you are interested in being on more than one site.
Take Care,
bertbiz

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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?

@katalinadrnnp

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

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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

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

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@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?

@mbbarrett

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?

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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

@mbbarrett

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?

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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!

i was wondering,is anyone having skin complications from this disease?I get cold induced panniculitis .Least I think I do…my skin burns from the cold.

@poppy73

i was wondering,is anyone having skin complications from this disease?I get cold induced panniculitis .Least I think I do…my skin burns from the cold.

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At one point I was told that an experience of an extreme extended cold or hot situation may have been what eniateted the disorder. I live in Canada and when I was 8 I was put in a very difficult situation. From then on I have struggled with any amount of cold or hot for any length of time.

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