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Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect
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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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
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.
Thanks to everyone for the advice and priceless information. Will definitely post back with the result.
@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
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.
Ops em come out wrong. Lisa
What shows up on the ct scan?Nancy Shermoen~
Inflammation. In my case, inflammation of the lymph nodes near the mesentery.
Mine is edema and inflammation of the mesentery. I am having a lot of pain with this.
@denia, I believe inflammation and edema are common and is what has put a lot of us in the ER in the beginning. If you have a lot of pain and bloating, certainly the inflammation and edema can cause that. If you can't tough it out, ask your Doctor if you can start on an Anti-inflammatory medication. Your history must be reviewed. Some treatments can be worse for some than others depending what other underlying issues you have. A Diabetic, for example, may have a very tough time taking Prednisone. The benefit must outweigh the risk. As I have said before it is best to get a recommendation for treatment from an MP experienced Doctor, if possible. Also, if you have been told recently that you have inflammation of the mesentery, ask your Doctor for a CRP with your next blood work. C-Reactive Protein, it is an indicator for inflammation in the body. I think it is good to know your CRT and make a note how you feel at that level. Keep it in your records for comparison. Get a binder with slide in plastic inserts. Every blood test, get a copy, save everything and put it in you folder. Learn as much as you can and be very proactive and stay positive. Get well everyone@vdouglas