Any answers? I’m in the middle of this right now at Cleveland Clinic in FL. All the symptoms of MCAS, but 24hr urine test for carcinoid syndrome was slightly above normal, so I had 2 CT scans and a PET scan with isotopes to show carcinoid tumors. Nothing was found, so now they want to do MRIs. I am going broke on the tests and visits, and still no answers. The challenge is, the symptoms of carcinoid and MCAS are very similar. My flushing is also accompanied by fluid retention and face puffiness as well as burning/itching skin, mucus, knee pain, flank and abdominal pain, tingling feet and hands, muscle twitching, and occasional palpitations. Sounds like MCAS, but nobody in the US seems to think that’s a real disease. So I continue to go pay large sums of $ to get tests and still no answers. I need to rule out carcinoid syndrome or MCAS so I know the w path forward and the prognosis. For my family’s sake more than anything.

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