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 />

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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