About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (8)

May 4, 2016 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi I don’t have Facebook. How can I get involve with this group ? (Schlerosing Mesenteritis and Idiopathic Nodular Panniculitis ) . I am an RN and am new to Connect. I am amazed how much I have learned in such a short time, and after so many years of my own research (despite no help from local MD’.s ) Dr Darryl Pardi at the Mayo Clinic was very helpful.
I live in Upstate NY (Halfmoon ) The trip to the Mayo Clinic was worth the cost and effort.
GMeg

May 4, 2016 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi I have had bloating for years, spurs on my ribs, lumps and bumps all over. I am going back to a strict Mediterranean diet as that addresses the overall inflammation, and has stopped polyp formation for 2 years. I ‘ll have another colonoscopy in a few months. My twin sister died from colon cancer in 2000. I’ve had polyps every year up until 2013. It stopped in the first year I followed the die and continued the second year, so my gastro suggested we wait two years. The CRP test which measures overall body inflammation has been within normal limits also.. That test should be done every year. Thanks for your inclusion in the group. GMeg

May 4, 2016 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

Hi The lumps and bumps were described by an MD long ago as fatty tissue under the skin. GMeg

May 3, 2016 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

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 !

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 )
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.
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)

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.

That’s all for now. Hope I’ve been of some help GMeg RN BS MBA CLNC

Apr 18, 2016 · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

I have been diagnosed with two types of panniculitis. I just found out about this site and saw your post. I will return to the site when I have collected my thoughts on what I want to share with you. Meanwhile I will leave two bits of information; I live in upstate New York and traveled to the Mayo Clinic 3 years ago to confirm a diagnosis of schlerosing mesenteritis. Since with my own research as a RN ( could not find an MD who even knows about panniculitis) I self diagnosed a systemic panniculitis called idiopathic nodular panniculitis. (There are 7 types of panniculitis.) Second bit of information: contact NIH and go to Genetic and Rare Diseases Information Center (GARD) They sent me a large packet of information. When you have read it contact me and we can discuss. gmeg

Oct 2, 2012 · Thank you for your response. Who do I contact at Mayo to in Just Want to Talk

Thank you for your response. Who do I contact at Mayo to set up an appointment? Did your insurance cover the visit/testing? How often do you have to go to Mayo? Is Mayo in contact with your local MD (gastroenterologist) ? Which Mayo location do you go to ? Lots of questions I know, but I am so excited to communitate with people who have this disorder. Do you have palpable “lumps and bumps” around the midsection and other areas of your body. I have them, as well as a CT finding of “shadowy” plaques on the mesentery. I will continue to contact you as I continue to continue on my journey for diagnosis and treatment. Meaghan @mdav1943

Oct 2, 2012 · Sclerosing Mesenteritis, Panniculitis in Digestive Health

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

Sep 23, 2012 · Sclerosing Mesenteritis, Panniculitis in Digestive Health

are these connected?