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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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I really only saw this Dr.For lack of anyone else.And he said he wants to wait for the bloods.Last night i would have gone to the hospital..
Do you know of a Dr.In New york or vicinity?
Blood work won't reveal anything relevant to MP, I don't believe. Only imaging. I've had 2 CT scans, 2 MRI s, and an MRCP. Oh, and some new fangled ultrasound of the pancreas that's done via endoscopy. The MP mass waa evident on all of them, and unchanged after 6 weeks of meds. Is this a PCP or a GI?
I'm from Canada, so I can't help with a doctor. I am under the care of a GI and my family doctor. My GI has taken over the treatment plan (Prednisone, Tamoxifen, and Azathioprine) and my family doctor has been taking care of my pain (in the oxy family). They communicate regularly. At the end of this month, I will be 'celebrating' my fifth year with this disease. I had been in remission for two years, but have been battling a flare up since August 2017. Diet doesn't seem to bother me (I am pretty health conscious to start with), but stress and the weather seem to be playing a role. I have had several relapses while trying to wean off of the Prednisone. We are hoping that we have the right cocktail now! I hope this helps you...
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1 ReactionActually, the hospital might have helped with pain management and ordering a ct scan.
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1 ReactionRobin, go to the ER. Go. Any decent ER doc will order another CT scan and certainly help get your pain under control. I've been hospitalized 4 times with MP. You probably know more about MP from Google than your doctor. It's a sad truth. You need a good GI who either has legitimate experience (which is not very likely) or whose ego won't prevent them from referring you to Mayo or a good teaching hospital near you. Fight for yourself. Be your own advocate. Go to the ER, hon.
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2 ReactionsThank you
Feel good
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2 ReactionsWhat did they give you in the Er?
Morphine through a drip.And they also did a ct scan to diagnose and subsequent visits to see if there had been any changes. I have remained stagnant since August 2017. Because of the meds that I am taking, I am beginning to have some sporadic good days where I am able to have a bit of a life!
Do they have any ideas where this comes from?