Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

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

Interested in more discussions like this? Go to the Digestive Health Support Group.

Von, Alumni Mentor | @vdouglas | Nov 16, 2017

In reply to @kimh "Is this group still active?" + (show)

@kimh I copied the link @kanaazpereira had already sent you, this is the one I wanted you to see if you haven't already, http://www.cghjournal.org/article/S1542-3565(07)00224-8/pdf

Von, Alumni Mentor | @vdouglas | Nov 16, 2017

In reply to @kimh "Is this group still active?" + (show)

Hello @jolied , Welcome to the Mayo Clinic Connect. Thank you for sharing your story with us. It sounds like you are very much in control of your care and treatment and it has moved along somewhat quickly and smoothly to some degree. Prednisone and Tomoxifen are wonder drugs but do have some down side.
I'm sorry you are dealing with the pain and tiredness. I suggest that my doctor monitor my C-reactive protein. I'm diabetic so I get blood test every 3 months, this allows me to monitor to some degree the amount of inflammation going on inside me. I make a note on my test results how I have been feeling for reference if things were to change and I have my A1-C to compare also.
I sent this to @kimh but it would be great if everyone would save a copy of it. I especially like the diagnostic/treatment flow chart.
http://www.cghjournal.org/article/S1542-3565(07)00224-8/pdf
I hope and pray you feel better,
Von @vdouglas

kimh | @kimh | Nov 17, 2017

In reply to @kimh "Is this group still active?" + (show)

Thank-you Von! I am going to print it out to go over it with a fine tooth comb! ( a little old school, I know!) I am so glad to have joined this group!

kimh | @kimh | Nov 17, 2017

It's so difficult when you have a rare disease, but being in a Northern community might be a complication if there is a lack of specialty doctors. I'm in southern Ontario, so I have met some doctors who have heard of or know patients with MP. I will be going to a gastroenterologist who had previously treated me for esophageal spasms (2014-2016). He seemed very well read and was open to listening me when I would share my experiences or symptoms. Most impressive to me, was his thoroughness. I hope it will be a similar experience now that the concentration will be on MP. I will keep you updated, though it would be a long distance for you to travel, unfortunately.

kimh | @kimh | Nov 17, 2017

In reply to @kanaazpereira "Hi @kimh, Since you will be seeing your doctor soon, and while we wait for other..." + (show)

Hi Kanaaz,
Thanks for the link!

viva | @viva | Nov 17, 2017

In reply to @kimh "Is this group still active?" + (show)

Thanks for your post I felt so much better after reading it! I have MP and it is a daily struggle!

Poppy73 | @poppy73 | Nov 17, 2017

In reply to @vdouglas "Hello @poppy73, how are you doing this evening? Von" + (show)

@kimh I agree with you.I do need a specialist. I have had so many years of being treated like a freak show I am more than willing to avoid blood draws,surgeries, and the questions.More like statements,” you’re so young” . I am a fourty year old with at 60 year old body.What more can you say.

I have bills.Then I am heading back into the loop again.

kimh | @kimh | Nov 18, 2017

In reply to @vdouglas "Hello @poppy73, how are you doing this evening? Von" + (show)

I agree. Anything that I have read seems to indicate that this is a disease that is more prevalent among elderly patients. I was diagnosed at 49, but because I had a hysterectomy at 40, it may be possible that my internal age is much older. Like you, I kept getting the 'you're too young to have MP'. Well it's nice to be a little extraordinary????

PCfromFM | @pcfromfm | Nov 18, 2017

In reply to @vdouglas "Hello @poppy73, how are you doing this evening? Von" + (show)

Interesting-Doctors suggested I have had this since I was around 8 possibly when I experienced some internal trama and got extremely cold as well. Ever since getting very cold has brought on an immediate gut reaction. Any kind of stress is not good for me. Autoimmune issues are a bit extreme in my family as well. How about others?- - -

Poppy73 | @poppy73 | Nov 18, 2017

In reply to @vdouglas "Hello @poppy73, how are you doing this evening? Von" + (show)

Thank you 🙂 You are very generous Von, you made my night.
I wish you all were next door so we could support each other in person. These doctors don't have the experience to make most of us feel comfortable. So we got to do it eh? Last thing we need to do is feel like a alien...

Man take care of yourself Von. This cold and flu stuff is no joke. Have someone got get you a elderberry syrup , cuz the last thing you need to be doing is coughing with this condition.