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pleasehelpmenow's Recent CancerCompass Activity

  • PleaseHelpMeNow has replied to a post on the message board

    Dear all: Still no diagnosis...seen over 12 specialists, had countless tests including 5HIAA, Octreoscans, and a battery CT-Scans, MRIs, Colonoscopies, Allerfy, POTS Table Tilt Tests, etc..... Everything comes back negative or too small to classify.  So Carcinoid specialist in Upstate NY will see her without a diagnosis.  Extremely frustrating, nearly impossible to switch GI doctors at the same hospital...

    July 13, 2017 view post
    • PleaseHelpMeNow has replied to a post on the message board

      Baby is perfectly healthy and normal!!! I'm still scared out of my mind. She hasn't been officially diagnosed yet, but we are now being A LOT MORE AGGRESSIVE! Hoping to see specialists in Philly once insurance approves it.  

      November 01, 2015 view post
      • PleaseHelpMeNow has created a new message board discussion

        Dear All: My gut is telling me that my wife will soon be diagnosed with NET/Carcinoid (experiencing all the common symptoms: flushing; uncontrollable diarrhea; seratonin and seratonin levels above normal; abdominal pains)....She's only 33 years old.... With today's medicine and all the new drugs (including PRRT), is there hope to live a LONG LIFE til at least 80 years old?!?!!? I'm so scared for her. We're looki...

        November 01, 2015 view discussion
        • PleaseHelpMeNow has created a new message board discussion

          Are there service dogs out there that would help detect when a Carcinoid Crisis is about to happen (rapid decrease in blood pressure; flushing; severe diarrhea?!?!)....my wife had to be rushed to a hospital on three occasions because of an episode. Just wondering if there are specific kind of service dogs that are in training to detect th onset of a crisis. Any information would be greatly appreciated. Thank you.&nbs...

          November 01, 2015 view discussion
          • PleaseHelpMeNow has replied to a post on the message board

            Doctors are saying, "Ischemic colitis" Is this another diagnosis to cover up a major issue. As we know, there are many doctors clueless or have never seen Carcinoid/NET in real life.  They also say she has a Mast cell problem.  First, it's IBS, sinus tachyardia, now this......everything still points to Carcinoid from what I read....am I being overly paranoid, or should we visit a CARCINOID SPECIALIS...

            October 29, 2015 view post
            • PleaseHelpMeNow has created a new message board discussion

              I posted about 20 months ago.....my wife delivered a beautiful baby girl. Our first child.  Again, my wife had another "episode" .... Flushing of the skin Abdomen pains Severe Diarrhea Rushed her to the ER. She's been having these "episodes" since she was 20 (she was earlier diagnosed with IBS and sinus tachyardia). This was I think her 6th and most severe episode...On top of the aforementioned, she had vom...

              October 29, 2015 view discussion
              • PleaseHelpMeNow has created a new message board discussion

                Dear All: Finally, a place to get some REAL answers from REAL people that know about this dreaded syndrome/tumor. My wife is 13 weeks pregnant. 6 months ago, she had an interesting episode. Face was flushing, massive diarrhea, light-headed, and I thought she was going to die. I called 9-1-1 and really didnt know how to explain what the heck happened. Went to the ER and they were puzzled. One ER doctor said there...

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