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BillyMac65 (@billymac65)

Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: May 10 9:57am | Replies (1408)

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@skywave

Hi There, It sounds you had the right doctor, I'm a couple of thousand miles away but I do need to ask a question about your Carcinoid. I've been diagnosed with MP since 2016, but and severe attacks from this since 2012. Did the doctor say where they located the carcinoid and your symptoms unless your symptoms were from MP? The reason why I'm asking is that doctors in Boston and in New Hampshire are clueless to what MP is. Most of what I've been reading is, many have had either lymphoma or tumor. So my own PCP doesn't believe in preventive care of MP and what it can lead to.

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Replies to "Hi There, It sounds you had the right doctor, I'm a couple of thousand miles away..."

I lived with MP for many years (first suspected in 2009 and subsequently diagnosed a couple years after that) and doctors (gastro and surgeons) said no big deal, not serious. Drove myself to ER in 2016 when pain so intense and CT scan which I read for myself indicated large swollen lymph node in mesentery and should be biopsied. I sought out surgeons in my area who all said impossible to get to that spot in mesentery to biopsy and remove. Last surgeon of a major hospital in my area who professed to be knowledgeable of MP told me that if there was one lymph node enlarged in one part of the body surely there would be one in another part. So he did endoscopy and biopsied one lymph node which proved negative, He prescribed prednisone and tomoxifen. I had already decided to go to Mayo Clinic in Rochester, MN and he was aware of that stating two minds are better than one. I did not take the meds. Dr Alexander, Gastro, Mayo Clinic, said of three options I could opt for exploratory which I did and he called in Surgeon for consult that afternoon. Most frequently said Alexander, they find the MP is a symptom of an underlying condition and they usually find Lymphoma but are sometimes surprised, Surgery with Dr Kellogg and team the following morning (July 15, 2016) at St Mary’s Hospital. They were surprised. I had Stage III Carcinoid Cancer. Three feet of small bowel removed, twelve tumors and 13 lymph nodes of which six tested positive for Carcinoid Cancer. (Doctors at Mayo know to harvest multiple lymph nodes for proper diagnosis as they see these situations on a far greater scale than any local doctors). Long story short, the pain of MP got so bad it was like something in me exploded and took my breath away. Doctors said my pain was A-Typical and happens like mine when things have progressed too far. I don’t tell you this to scare you, but after so many missed signals by my specialists in my home town and surrounding area (metropolitan area no less), I am happy to shed light on this in hopes someone else can perhaps find another cause of their discomfort if indeed there is another cause. Hope this is the answer you were looking for. Good luck.

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