Mayo Clinic Connect
are these connected?
Been diagnosed with this-have any medicines helped?
I’m still looking for an MD who is aware of the condition and/or treats it. Hopefully I can find a gastroenterologist in the Albany, NY area. Today I am going to call Mayo Clinic to see if they know someone near here. I am a nurse who has become disgusted with ths MD’s I have seen who say they don’t know what this is, and refuse to find out. I only have CT finding to go on, not a definite diagnosis. Thank you for replying. Meaghan
Liked by billiec
I’ve been treated for sclerosing mesenteritis by Mayo since 2004. Treatment of choice is tamoxifin (sp?) sometimes coupled with prednisone. As far as I know the central researcher is Darrell Pardi, M.D. As for finding someone in the Albany area I am doubtful you will find anyone there who has even heard of the disorder of seen a case. My claim is solely based on the extreme rarity of the disease (perhaps 200 reported cases in the US.). No one in San Antonio TX, my home, had any idea what SM was or how to treat it. I hope these few words will prove useful to you. Please write if you think I could help you further.
Using a Dr. at St. Lukes in Houston; who hasn’t seen many cases. Had an extremely bad reaction to prednisone so it had to be discontinued. For now, also just relying on CAT scan every 6 months to check for changes. Has anyone mentioned to you the possibility of underlying lymphoma or suggested a biopsy to check for it. One surgeon wouldn’t consider biopsy- too risky. Heard of any of this?
My mass was biopsied in 2001 and was found to be noncancerous. Did not handle prednisone well either. In 2011 Dr. Pardi told me there was a case or two in which the mass did become a lymphoma. So I am given to believe that this is a possible, but remote development. I am currently taking tamoxifen 10 mg, bid and have a scan every year or so. The mass has stayed quiescent and stable since 2004. But I have adhesions, scar tissue, and tethering due to surgeries of the bowel which makes proper functioning difficult. This issue is generally manageable with small frequent meals. One other thing my SM encases the superior mesenteric artery. This a quite dangerous situation in that the mass can compress arterial structures, compromise blood flow to the intestine, and cause some of the small bowel to die. This in fact happened to me in 2003.
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