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Mesenteric Panniculitis or Sclerosing Mesenteritis
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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HugInterested in more discussions like this? Go to the Digestive Health Support Group.
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Welcome @mjg1160!
I moved your message to this discussion thread where you'll meet many Connect members who live with mesenteric panniculitis. Some, like you, were diagnosed recently. Others have been managing the condition for quite some time. If you read through the thread, you'll see several specialists have been mentioned. Which area do you live in?
I'm also tagging @billymac65 @mommasaid @vdouglas @doron @ngilson @billindc and others to join in. mjg, I'm sure you have lots of questions. There's a great group of people here ready to share their experiences. Ask away.
Thanks Colleen for letting folks know about the Sclerosing Mesenteritis<br />
group on Facebook. We are networking and helping each other out! Vivian<br />
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I I am gmeg, a new contributor to Connect. I have both Schlosing Mesenteritis and Idiopathic Nodular Panniculitis for many years. I live in upstate NY in Halfmoon. I have been to see Dr Darryl Pardi, Gastrologist at the Mayo Clinic 3 years ago. He said my second CT indicated slight improvement since I put myself on a Mediterranean diet a year prior. He did not acknowledge my Nodular Panniculitis however. I only just diagnosed that myself as the doctors I have been to here ignored, denied knowledge of, said "; I don't have time to do the research ", " I only deal with poop and colonoscopies " " a nurse can't diagnose this" and other such nonsense ! <br />
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So I have done my own research. There are seven kinds of panniculitis. I have two,one diagnosed in BOSTON in 1974 when I flew up to a Boston hospital from Costa Rica for a diagnosis of lumps and bumps on my arms.. since I lived in Costa Rica 40 years ago. The MD actually read from a text book as he told me the diagnosis "panniculitis". It surprised Dr Pardi. that I had at least one form of panniculitis that far back. All I had was a diagnosis, no other info By the way he has agreed to communicate with my gastro, which I am changing due to his ignorant cavalier attitude about my condition. ( I'm, also changing my PCP also on his limp excuse for not helping me find out about my condition )<br />
I am told there are only 2 gastroenterologist in the country that are experts on MS; Dr Pardi at the Mayo Clinic, and one in Chicago. (Don't know his name.) Also that there are only about 200 people in this country that have MS.<br />
The message I want to impart is to ignore stupidity from doctors that want to cover up their ignorance ( they can't know every condition but should acknowledge that , and offer to assist in the research)<br />
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A trip to Dr Pardi at the Mayo Clinic is worth the money. If you go in February the adjoining hotel has very low rates every February. Your insurance should cover the visit if you let them know who the MD is, that the disease is as rare as it is, and that you cannot find ay MD in your Network that knows about or treats the disease.<br />
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That's all for now. Hope I've been of some help GMeg RN BS MBA CLNC<br />
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Welcome to Connect @gmeg! Yes, one has to advocate for oneself. Great to have you join the group.
What symptoms are you dealing with at the moment?
Current symptoms are abdominal pain, bloating, but nausea has improved.<br />
Have to go out and shop for new pants due to the pressure on abdomen and I<br />
have to refrain from bending forward at the waist. Appointment tomorrow to<br />
discuss going back on prednisone. Thanks for asking! J ~Bill<br />
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Gmeg,<br />
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Thanks so much for writing! Could you tell me something about the "lumps<br />
and bumps", since I've found a few pea-sized lumps under the skin of my<br />
forearm that no one can figure out.<br />
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I just read a paper from NIH discussing Ankylosing Spondylitis and<br />
periodontal disease. I tried discussing with my Dentist this week when I<br />
asked her to accommodate what the paper had recommended and she said "you<br />
can't believe everything you read". I think I can put some faith in a study<br />
when it's from NIH, and I have an MS in Pharmacy so I can do some basic<br />
interpretation...gee whiz! LOL An MD or PhD doesn't guarantee you have a<br />
monopoly on intelligence. I'm sorry you have run into that behavior. Stick<br />
to your guns and look out for yourself because no one else is going to do it<br />
for you!<br />
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Warmest,<br />
<br />
~Bill<br />
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1 ReactionI also have the bloating and fullness. I have other health issues and trying to figure out what is what. Sorry if this is too long. One of my Doctors years ago told me I was sensitive to my body and said but that is good. Since I am new with this as well I was wondering if others can explain how they feel. I sleep with a Cpap and start off sleeping on my back but I flip flop a lot. <br />
I am real sensitive to medicines and anything I take for pain relaxes my esophagus and makes my Gerd worse so I hardly ever take anything and when I do I take Tylenol or Advil and even this makes things worse. I wake up in the wee hours due to my back, legs, or what I call my gut pain. It covers my abdomen like a lid to a pot and kind of radiates out. I turn on my sides to try and alleviate the pain. It's like I feel the Mesentery flipping.Once I wake up I am awake and don't go back to sleep which is exhausting. I try and eat the Mediterranean diet for my vascular problems but I think the fiber makes things worse I eat so many salads And chicken I am sick of it. The only fish I like are cod, tuna, tilapia and other mild white fish like the wonderful walleye you have in Rochester but we can't get here. If it taste fishy I can't eat it. Does this sound like MS to y'all ?<br />
Thanks so much. <br />
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One other thing, has anyone been told they are sensitive to preservatives? I have been told I have rosace birth on my face and nose and is eyes. My local doctor did a patch test and told me I was sensitive to three different preservatives. She said she couldn't check me for all so she pick the most common. I have a sensitive taste and smell and I can taste what smells like preservatives in salads that are supposed to be organic especially Earthbound brand. Thanks so much<br />
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Sorry but also does anyone have sclerosing pancrititis? <br />
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