Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @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

@jaimeworth89

Hello Everyone!

I was just diagnosed with Mesenteric Panniculitis last week. I had been having abdominal pain also with other symptoms the past 8 weeks that had been worseing over time. I had gone to my PCP and also my G.I. and I didn't feel they were listening to me. They kept talking about my acid reflux even though mine has been well controlled for several years now. I ended up going to the ER and had a CT scan which confirmed the diagnosis. I have since showed the findings to my GI doctor, and he is now taking things more seriously. I'm still pending the results of my blood work that's testing my inflammatory markers. Currently my doctor wants to wait the next 4-6 weeks to see if it will magcially go away on it's own. Will repeat the CT scan at that time, and will most likely do a biopsy. I've been inm so much pain and I'm hardly eating right now. I have lost 10 lbs in a little under a week. Don't get me wrong the wightloss is a good thing, but not in this scenario. My GI wants to hold off on steroids for the time being and has given me Tramadol, Librax, and Hyoscyamine Sulfate to see if it will help with the abdominal pain. A little back story on me, I have Celiacs Disease and my mother was recently diagnosed with RA. From what I've read, people with auto immune disorders in their family can mean you have a higher liklihood of contracting MP. I feel like I need to vent since I'm pretty worried. Based on what I've described, does this sound like a good medical plan for the illness or should I seek a second opinion with another doctor? I'm only 29, and not sure how many other people in my age group have been doagnosed with this.

Jump to this post

Hi Jaime,
I want to say welcome, but I understand how frustrated you must be. We all do. In my experience, steroids (though I hate the side effects) seem to help with the symptoms of MP. I have also been taking Tamoxifen alongside the Prednisone. I think once most people reach remission, they don't fall back out. I'm one of those 'other' cases who has fallen out of remission and have been battling symptoms for over a year now. My GI is weaning me off of Prednisone and if my symptoms persist (I feel like I am relapsing since weaning down with all typical symptoms returning….), we will be looking at immuno-suppressant medications. It's frustrating that there seems to be no further advances to help us! Through this site (and I'm sorry that I have forgotten who wrote the post!), I read a great book on how to deal with chronic illness called "How to be Sick" by Toni Bernhard. To answer your question about a second opinion, I have discovered that most people in the medical field don't know anything about this disease. I can tell you that from my experience, MP does not go away. I ended up being diagnosed through surgical biopsy, only to rule out lymphoma because my inflammations grew during the week that I was hospitalised. To answer your other question regarding autoimmune diseases, yes I blame my mother (she has ITP) entirely lol!! I also have hypothyroidism and typically welcome weight loss, but as you stated, not in this way. I hope this helps….

REPLY
@jaimeworth89

Hello Everyone!

I was just diagnosed with Mesenteric Panniculitis last week. I had been having abdominal pain also with other symptoms the past 8 weeks that had been worseing over time. I had gone to my PCP and also my G.I. and I didn't feel they were listening to me. They kept talking about my acid reflux even though mine has been well controlled for several years now. I ended up going to the ER and had a CT scan which confirmed the diagnosis. I have since showed the findings to my GI doctor, and he is now taking things more seriously. I'm still pending the results of my blood work that's testing my inflammatory markers. Currently my doctor wants to wait the next 4-6 weeks to see if it will magcially go away on it's own. Will repeat the CT scan at that time, and will most likely do a biopsy. I've been inm so much pain and I'm hardly eating right now. I have lost 10 lbs in a little under a week. Don't get me wrong the wightloss is a good thing, but not in this scenario. My GI wants to hold off on steroids for the time being and has given me Tramadol, Librax, and Hyoscyamine Sulfate to see if it will help with the abdominal pain. A little back story on me, I have Celiacs Disease and my mother was recently diagnosed with RA. From what I've read, people with auto immune disorders in their family can mean you have a higher liklihood of contracting MP. I feel like I need to vent since I'm pretty worried. Based on what I've described, does this sound like a good medical plan for the illness or should I seek a second opinion with another doctor? I'm only 29, and not sure how many other people in my age group have been doagnosed with this.

Jump to this post

HI there,

I don't know if my reply was sent because I wasn't logged in, but here it is again just in case:

Hi there,

I had acid refux for years and then got the auto immune version of the MP. I suffered tremendously until I started the Paleo Auto immune protocol diet and then started taking supplements for auto immune as recommended by Chris Kresser (http://my.chriskresser.com/the-supplement-guide/). The probiotic recommended is no longer available, but Dr. Mark Hyman from the cleveland clinic has some recommendations. Initially, I added ginger root extract, and grapefruit seed extract. I am a western medicine kind of guy, but didn't want to take all the steroids that my doctors recommended. Not only did my pain associated with Pannicultis go away, I also no longer had acid reflux after about 7 years or so. I now cheat regularly until I have signs that I need to go back on the diet, but I was diligent for 6 weeks, and then slowly added foods to see what affects me. I also had high triglycerides, and elevated liver enzymes and inflammation markers. All of these issues resolved themselves with the diet. Good luck and stay positive.

take care, Doron

REPLY
@billindc

Thanks so much for responding. I can only say that we all have to “hang in
there”! J No other alternative. I wish Rochester, MN was closer to DC.
Apparently not much going on up at Hopkins in the way of research, but I
received a nice email from a doc at Mayo who was willing to make himself
available to speak to my GI doc in DC.what a nice thing to do. ~Bill

Jump to this post

How did you contact the dr at the Mayo ? Do you have an email address? I have MP . thxs for any help

REPLY
@paulalee

How did you contact the dr at the Mayo ? Do you have an email address? I have MP . thxs for any help

Jump to this post

Contact Dr Glenn Alexander or Dr Pardi, both in the Gastrentetology Dept at Mayo Clinic, Rochester, MN. The contact info can be googled. You need to write a letter describing your symptoms, the tests you have had and results. Ask for an appointment. You will be contacted with a date and time. They do not want any records or images sent to them, you bring them with you for downloading at that station. You will receive a schedule with bloodwork first. They will tell you to plan for a 10 day stay for tests and any exploratory surgery, etc. I suffered with MP for many years. During exploratory I was diagnosed with Carcinoid Cancer which surprised everyone. Good luck. It was the best decision I could have made. I am a Stage IIIB rare cancer survivor. They saved my life.

REPLY
@jaimeworth89

Hello Everyone!

I was just diagnosed with Mesenteric Panniculitis last week. I had been having abdominal pain also with other symptoms the past 8 weeks that had been worseing over time. I had gone to my PCP and also my G.I. and I didn't feel they were listening to me. They kept talking about my acid reflux even though mine has been well controlled for several years now. I ended up going to the ER and had a CT scan which confirmed the diagnosis. I have since showed the findings to my GI doctor, and he is now taking things more seriously. I'm still pending the results of my blood work that's testing my inflammatory markers. Currently my doctor wants to wait the next 4-6 weeks to see if it will magcially go away on it's own. Will repeat the CT scan at that time, and will most likely do a biopsy. I've been inm so much pain and I'm hardly eating right now. I have lost 10 lbs in a little under a week. Don't get me wrong the wightloss is a good thing, but not in this scenario. My GI wants to hold off on steroids for the time being and has given me Tramadol, Librax, and Hyoscyamine Sulfate to see if it will help with the abdominal pain. A little back story on me, I have Celiacs Disease and my mother was recently diagnosed with RA. From what I've read, people with auto immune disorders in their family can mean you have a higher liklihood of contracting MP. I feel like I need to vent since I'm pretty worried. Based on what I've described, does this sound like a good medical plan for the illness or should I seek a second opinion with another doctor? I'm only 29, and not sure how many other people in my age group have been doagnosed with this.

Jump to this post

Can’t impress on you to take this on aggressively and find a specialist. See my post about contacting Dr Alexander or Dr Pardi at Mayo Clinic, Rochester, MN

REPLY
@hopeful33250

@musicflowers4u

Hello, I just noticed in your post that you mentioned Carcinoid cancer. I wanted to take the opportunity to invite you to share in our NET discussion group. Here is the link to our NET discussion, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/tab/discussions/

Most of us feel like you do – we are fortunate that this rare disorder was found, one way or the other. One word of caution, though, I see that you were told to continue the follow up for 10 years, however, on my 11th year (after my 2nd surgery) I had another NET appear – it is better to keep the surveillance going longer than necessary to ensure that you stay free from NETs.

I would be interested in hearing about the results of the Gallium-68 when you have it.

I look forward to hearing from you again.

Teresa

Jump to this post

My Gallium 68 Dotatate scan did not show any new neuroendocrine cancer. I am thankful. I have however been diagnosed with hypothyroidism and am now concerned it might be related to so much radiation over the past three years. Currently on low dose if thyroid Med.

REPLY
@jimbo91372

My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago area and are wondering if anyone can recommend a doctor in our area? Her GI doctor is unfamiliar with the condition and dosent really know what to do. We are in the process of researching doctors but as a lot of you probably already know not many doctors can help with this disease! Hope to hear from someone soon ,thanks!

Jump to this post

Best doctors are Dr Alexander and Dr Pardi at Mayo Clinic in Rochester, MN. Google contact info, send letter with symptoms, test results. Request appointment.

REPLY
@jolied

I had a biopsy for MP and it was confirmed, been on steroids 6 mths, now off, only on tomoxefen. I have blood tests to check for Tumours. I am getting cramps Under my chest. Not sure what that is all about. Just been for another Ct scan.

Jump to this post

Highly recommend Dr Alexander or Dr Pardi to see if exploratory in order at Mayo Clinic, Rochester, MN. Google for contact info and instructions.

REPLY

@musicflowers4u and all others with MP, can you tell me how MP is diagnosed? What tests in particular were done?

REPLY
@musicflowers4u

Contact Dr Glenn Alexander or Dr Pardi, both in the Gastrentetology Dept at Mayo Clinic, Rochester, MN. The contact info can be googled. You need to write a letter describing your symptoms, the tests you have had and results. Ask for an appointment. You will be contacted with a date and time. They do not want any records or images sent to them, you bring them with you for downloading at that station. You will receive a schedule with bloodwork first. They will tell you to plan for a 10 day stay for tests and any exploratory surgery, etc. I suffered with MP for many years. During exploratory I was diagnosed with Carcinoid Cancer which surprised everyone. Good luck. It was the best decision I could have made. I am a Stage IIIB rare cancer survivor. They saved my life.

Jump to this post

@musicflowers4u
Wow, what a great report! Thanks for sharing that information.

REPLY
@hopeful33250

@musicflowers4u and all others with MP, can you tell me how MP is diagnosed? What tests in particular were done?

Jump to this post

I had a couple of CT scans and eventually surgical biopsy to rule out lymphoma. Luckily, I only have MP.

REPLY
@jcdeep

I am currently inpatient at a hospital I got admitted from the emergency room. It has been 10 days now and I have had an EGD, Chest x-ray, CT scan of abdomen and pelvis with contrast, a laparoscopy, and countless amounts of blood tests. The doctors tell me I have something very rare and she has never seen it her entire career. Biopsies were taken during the laparoscopy and I am still waiting on results to see if it is cancerous. I am not being told much so I reviewed some of my procedures to see if I can get answers. I found that the radiologist may think it is sclerosing Mesenteritis Which was found in my CT scan. Every other test has come back unremarkable, the only thing they see is thickening of the Omentum But are unable to find an underlying cause. They also found I have bilateral plural effusion, which they performed thoracentesis to remove the fluid In the right side plural space. It was tested and found negative for malignancy unable to find the cause of why the fluid was there. I decided to go to the emergency room after having excruciating pain in my abdomen for about a month and difficulty breathing which turns out to be from the pleural fluid. The pain in my abdomen started off on my lower left side but has really moved all around. The pain seems to get worse at night and in the morning. I am a 42 year old male with no major medical history besides a ruptured esophagus that has been repaired. I also have peptic ulcer disease and just discovered I also have H. Pylori. Has anyone else been diagnosed with sclerosing Mesenteritis? What where your symptoms? I feel like I am going to leave the hospital with no answers or help because they can’t officially diagnose me.

Jump to this post

Hello @jcdeep, welcome to Connect. I am sorry you are having trouble getting answers and trying to find out what to do next. I am tagging our moderator @kanaazpereira to see if she is able to move your post and combine it with the following discussion where you will be able to meet other members who share your symptoms. In the meantime you may want to read through the discussion to see if you can find any answers.

Groups > Digestive Health > Mesenteric Panniculitis or Sclerosing Mesenteritis
https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

@jcdeep have you found anything that helps you cope with the symptoms?

John

REPLY

I am currently inpatient at a hospital I got admitted from the emergency room. It has been 10 days now and I have had an EGD, Chest x-ray, CT scan of abdomen and pelvis with contrast, a laparoscopy, and countless amounts of blood tests. The doctors tell me I have something very rare and she has never seen it her entire career. Biopsies were taken during the laparoscopy and I am still waiting on results to see if it is cancerous. I am not being told much so I reviewed some of my procedures to see if I can get answers. I found that the radiologist may think it is sclerosing Mesenteritis Which was found in my CT scan. Every other test has come back unremarkable, the only thing they see is thickening of the Omentum But are unable to find an underlying cause. They also found I have bilateral plural effusion, which they performed thoracentesis to remove the fluid In the right side plural space. It was tested and found negative for malignancy unable to find the cause of why the fluid was there. I decided to go to the emergency room after having excruciating pain in my abdomen for about a month and difficulty breathing which turns out to be from the pleural fluid. The pain in my abdomen started off on my lower left side but has really moved all around. The pain seems to get worse at night and in the morning. I am a 42 year old male with no major medical history besides a ruptured esophagus that has been repaired. I also have peptic ulcer disease and just discovered I also have H. Pylori. Has anyone else been diagnosed with sclerosing Mesenteritis? What where your symptoms? I feel like I am going to leave the hospital with no answers or help because they can’t officially diagnose me.

REPLY

Can anyone please share how they got diagnosed with this disease and what your medical findings and symptoms were.

REPLY

Hi @jcdeep,

I can imagine how worried you must be, and I want to thank you for reaching out to the Connect community. Living with a chronic condition can be so difficult and frustrating. Here is some information about Sclerosing mesenteritis care at Mayo Clinic, which I would encourage you to read:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-2035509vdouglas

You may notice that I moved your discussion and combined it with this existing discussion on sclerosing mesenteritis as I thought it would be beneficial for you to be introduced to the many members in this group – I'm tagging @kimh @jaimeworth89 @doron @musicflowers4u @warlick @sjean @pcfromfm @fernandoparce @cconnors @bertbiz @vdouglas who've also been living with MP and who would be happy to answer your questions.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

@jcdeep, as you will read, sclerosing mesenteritis is rare, and it's not clear what causes it; has your current healthcare team in the hospital given you an explanation for what's causing the pain? Have they prescribed any pain medications?

REPLY
Please login or register to post a reply.