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

@bertbiz

Hi Lynn, I am so sorry you are having so much trouble finding a doctor. But that is why they call it the “practice” of medicine. The problem with MP and other diseases like it, is you have to turn into the best advocate for yourself. You have to INSIST on being seen. That’s what I had to do. I called on a Thursday and talked to the nurse practitioner and said “This is how it’s going to go…I’m going to be seen by a doctor tomorrow morning, have a CT Scan and have answers by the end of the day.” That’s exactly what happened. That’s when I got my diagnosis of MP. It is so rare, the radiologist that read my scan had never seen a case, just read about it. By the following week I was in the GI doctor’s office and was on prednisone by the end of that week. I can’t stress enough about becoming your own best advocate! Do your research, find out what the options are. If you don’t like the current doctor, find a different one. I sound a little soap-boxy, sorry. I also started on the FODMAP diet. I talk about that all the time. It was so helpful for me. I was able to eat and put back on the weight I had lost. I felt stronger and healthier. It’s a long road, as you know too well. I don’t get the whole “dermatologist’ thing. Stay strong. We are all here for you. It’s a great resource.

Roberta

Jump to this post

I am at the very beginning of my diagnosis and am wondering if I should just begin with a doctor that is familiar with MP. I have been having excruciating pain in my right upper quadrant (no gall bladder) with diarrhea off and on, bloating, indigestion etc. They found the MP on a CT scan. I have an appt with gastro next week, but want to find someone in my area that is familiar with treating this. I live in Dallas, any suggestions?

REPLY

I too am early in my diagnosis. I am currently seeing a general practitioner and also a surgeon. Neither, from what I can tell are really familiar with MP. I have had two ct scans. The second was ordered by the surgeon. Since there was no signs of increase in size of the growths, we are on a wait and see mode with him. My GP has decided to get a second opinion. Waiting on the appt. I would suggest you attempt to find someone familiar with MP regardless to what letters are behind their name. That seems to be the challenge!

Liked by Deena

REPLY
@viva

I too am early in my diagnosis. I am currently seeing a general practitioner and also a surgeon. Neither, from what I can tell are really familiar with MP. I have had two ct scans. The second was ordered by the surgeon. Since there was no signs of increase in size of the growths, we are on a wait and see mode with him. My GP has decided to get a second opinion. Waiting on the appt. I would suggest you attempt to find someone familiar with MP regardless to what letters are behind their name. That seems to be the challenge!

Jump to this post

Thank you! Good to know.

REPLY
@viva

I too am early in my diagnosis. I am currently seeing a general practitioner and also a surgeon. Neither, from what I can tell are really familiar with MP. I have had two ct scans. The second was ordered by the surgeon. Since there was no signs of increase in size of the growths, we are on a wait and see mode with him. My GP has decided to get a second opinion. Waiting on the appt. I would suggest you attempt to find someone familiar with MP regardless to what letters are behind their name. That seems to be the challenge!

Jump to this post

Hello @viva (and @denia),I just wanted to give my opinion regarding seeing a Doctor with experience treating MP. I agree with you @viva, finding a doctor familiar with MP is important. At least for a consultation. My recommendation is Dr. Darrell Pardi at the Mayo Clinic in Rochester Minnesota. This disease can turn your life upside down if you don’t see an “MP” qualified Doctor. I realize it may be a hardship to travel and see him and your insurance may not pay for it, but if there is any way you can, I would go online and set up an appointment. Dr. Pardi and his Associates are very qualified. He will be able to read your CT scan(s) and determine the best course of action. In my situation it was to do nothing. I had all the typical symptoms and they just got less severe over time. I had become asymptomatic. Had I not seen him my doctors would still be running multiple CT’s, blood test and who knows what. They didn’t have a clue. You can have the Mayo Clinic handle any procedures he orders or it may be possible He will advise your Provider (GP) and communicate with him or her how to best handle your case. There are important answers that are needed. I don’t want to go into that much detail but only someone like Dr. Pardi can determine how to interpret the information based on experience. At the very least you can try a remote consultation. Apply for the consultation, send your CT scans (on a Disk) and any other information to him for a reading. He would not be able to do a hands on exam but he may be able to direct your Doctor. I have not heard of anyone doing this but I don’t know why it would not be possible. I am not affiliated with the Clinic or Dr. Pardi in any way. I am just a satisfied MP Patient. I would be glad to assist anyone wishing to make the contact. Wishing you good health as always,   vdouglas

Liked by denia

REPLY
@viva

I too am early in my diagnosis. I am currently seeing a general practitioner and also a surgeon. Neither, from what I can tell are really familiar with MP. I have had two ct scans. The second was ordered by the surgeon. Since there was no signs of increase in size of the growths, we are on a wait and see mode with him. My GP has decided to get a second opinion. Waiting on the appt. I would suggest you attempt to find someone familiar with MP regardless to what letters are behind their name. That seems to be the challenge!

Jump to this post

hello, I’ve heard a lot about Dr. Pardi. Any contact information or other information will be appreciated ! I would hope my GP would contact him.Thank you.VivaPowered by Cricket Wireless.

REPLY

@viva, here is a link to the Gastroenterology and Hepatology Department at Mayo Clinic in Rochester.
http://www.mayoclinic.org/departments-centers/gastroenterology-hepatology/doctors, here you will find great information on specialty groups, physicians and a link to request and Appointment.

Best of luck to you-

REPLY
@viva

I too am early in my diagnosis. I am currently seeing a general practitioner and also a surgeon. Neither, from what I can tell are really familiar with MP. I have had two ct scans. The second was ordered by the surgeon. Since there was no signs of increase in size of the growths, we are on a wait and see mode with him. My GP has decided to get a second opinion. Waiting on the appt. I would suggest you attempt to find someone familiar with MP regardless to what letters are behind their name. That seems to be the challenge!

Jump to this post

@vivaIf viewing this on the Mayo Clinic Connect, there should be a “Make An Appointment” button  in the top right hand corner. Click that button and fill out the information required to make an appointment. You need to request Mayo Clinic Rochester Mn, Dr. Darrell S. Pardi  and specify that you would like a consultation and/or treatment for Mesenteric Panniculitis or other variations of the same. You will be contacted. You will almost certainly need to send them a copy of your CT(s) and reports so I would call your radiologist or the radiology/imaging dept. at the hospital and request a copy. The first copy is usually provided free, you may be charged a small fee for the second. I would get two because you need to keep one in your file at home. If you want things to move quicky try to prepare all of this in advance. You will be contacted again after the CT and any other requested information is evaluated. Be advised you are requesting a service around this point and your insurance or Medicare may be charged for consultation. I don’t know this as a matter of fact, I would just expect it as a very qualified individual will be reading your CT. This information may become part of your History at a very reputable Clinic to establish your baseline for any future needs. You really need to establish a baseline to be able to see how your Mesentery changes.If you are trying to do just a consultation based on your CT reading let that be known up front that you cannot travel and want your doctor to be advised. I went to the Clinic so I don’t know if this will work as a remote consultation. There may be legal issues that prevent it, but it is worth a try.@vdouglas

REPLY
@jamienolson

@viva, here is a link to the Gastroenterology and Hepatology Department at Mayo Clinic in Rochester.
http://www.mayoclinic.org/departments-centers/gastroenterology-hepatology/doctors, here you will find great information on specialty groups, physicians and a link to request and Appointment.

Best of luck to you-

Jump to this post

Sorry I got ahead of myself, apreciate the much easier path to make an appointment with Dr. Pardi.Please let me know if I am stepping out of line on the site. I have been where a lot of them are and it is so very frustrating. I personally feel it is necessary to see Dr. Pardi not only for guidance but for historical documentation on a personal level and for the whole. I do not know what is actually crossing the line.Best Regards@vdouglas

REPLY
@jamienolson

@viva, here is a link to the Gastroenterology and Hepatology Department at Mayo Clinic in Rochester.
http://www.mayoclinic.org/departments-centers/gastroenterology-hepatology/doctors, here you will find great information on specialty groups, physicians and a link to request and Appointment.

Best of luck to you-

Jump to this post

I appreciate your help and assistance. My journey started out recently with a CT scan and something my doc called Misty Mesentery. He said it sound like a “lady of the night” disease. Of course I left his office and found another doc who charged lots and said basically to have a food allergy test. So I did…and I came up with a slight allergy to Wheat/gluten. I have pretty much removed all this from my diet and still have the bloating etc. However, sooner or later I will have to make an appointment with Dr. Pardi. For what it’s worth, I have learned more from Lisa’s FB group and this group then the 4 doctors I paid lots of money to see. No pain or bother just need to eat small meals as I feel I digest it better. I eat whole foods and mostly plant based which has made a difference for me.

REPLY

Thanks to everyone for the advice and priceless information. Will definitely post back with the result.

REPLY
@bertbiz

I was diagnosed with MP May of this year. I understand you pain and fatigue. You are not complaining, you are stating how you feel. What kind of treatment have you gotten?

Jump to this post

@snoopdogHey, I’m sorry you are going through this. Pain is a horrible thing to deal with and can really make everything seem hopeless. It’s easy for me to say that right, I’m not the one in pain right now. But there are people that understand and care. We are just as helpless at times. Have you been seen by any Gastroenterologist? Did you have a CT scan? What was read on your CT? Please let me know.vdouglas

REPLY
@bertbiz

I was diagnosed with MP May of this year. I understand you pain and fatigue. You are not complaining, you are stating how you feel. What kind of treatment have you gotten?

Jump to this post

Dear Snoop Dogg, please feel free to private message me. We have a private medical group with approximately 290 members with MP  and SM in it. It’s a private Medical Group. We have multiple people in Florida that I can Network you with with their doctors and Hospital facilities. You can reach me on Facebook at Lisa Schwartz in Tulsa Oklahoma.

REPLY
@bertbiz

I was diagnosed with MP May of this year. I understand you pain and fatigue. You are not complaining, you are stating how you feel. What kind of treatment have you gotten?

Jump to this post

Ops em come out wrong. Lisa

REPLY
@viva

I too am early in my diagnosis. I am currently seeing a general practitioner and also a surgeon. Neither, from what I can tell are really familiar with MP. I have had two ct scans. The second was ordered by the surgeon. Since there was no signs of increase in size of the growths, we are on a wait and see mode with him. My GP has decided to get a second opinion. Waiting on the appt. I would suggest you attempt to find someone familiar with MP regardless to what letters are behind their name. That seems to be the challenge!

Jump to this post

What shows up on the ct scan?Nancy Shermoen~

REPLY
@viva

I too am early in my diagnosis. I am currently seeing a general practitioner and also a surgeon. Neither, from what I can tell are really familiar with MP. I have had two ct scans. The second was ordered by the surgeon. Since there was no signs of increase in size of the growths, we are on a wait and see mode with him. My GP has decided to get a second opinion. Waiting on the appt. I would suggest you attempt to find someone familiar with MP regardless to what letters are behind their name. That seems to be the challenge!

Jump to this post

Inflammation. In my case, inflammation of the lymph nodes near the mesentery.

REPLY
Please login or register to post a reply.