Carcinoid Syndrome with no diagnosis of Tumors

KarenSA

Hi from South Africa.  I've been experiencing a the symptoms of Carcinoid Syndrome for some time now. I've been treated for everyone of those symptoms seperately over the past few years. I've had Chronic diarrhea for so long, Shortness of breath that suddenly appeared this time last year, heart palpatations, now flushing and swelling of my extremities, especially my left foot, but also my abdomen.

Over the past weeks I've connected the dots after a lot of research. I've not have a doctor that diagnosed me yet. My Chromogranin A test came back at 38.8 ng/mL. There is only one doctor that thinks I'm not crazy and is helping me to get the tests done, and it is my Psychiatrist of 10 years. I'm getting the 5-HIAA urine test done this week.

Over the past few weeks I've had bloods drawn. Had a lung function test (normal), Had a chest CT (nodel with one lesion 2.8mm), and a bronchoscopy this past Friday. The Pulmonologist does not believe that I have Carcinoid Syndrome, especially now that he has found what he thinks is the only reason for my shortness of breath and wheezing. - A narrowing in my airways (like scar tissue) because of what he believes is my chronic acid reflux.

Friday was interesteing, because I woke up struggling to breathe more than usual. Then while waiting to be admitted I had the worse flushing I've had since it began. For about five minutes it looked like I was sunburned on my whole face and neck. I thought it was just the stress that brought it on. I usually don't get bad flushing. Sometimes it is only on my cheeks and sometimes only just the one cheek that flushes. Especially in the mornings when I wake up.

Since the procedure on Friday, my breathing has been more laboured and the wheezing worse when I move. Also the coughing is worse.

I'm scared. It is Sunday and I'm still not feeling well. This Pulmonologist wants to remove the scar tissue with Laser this coming Friday. I'm worried that if a small procedure like the bronchoscopy caused me breathing distress for days afterward, that Carcinoid Crisis might happen during Anestesia and surgery this coming Friday.

I'm also seeing a Gastroenterologist the week following the operation. I'm going to try and convince him to do a capsule endoscopy. Reason being is that apart from the diarrhea, my food also doesn't digest well. A gastroscopy and colonoscopy last year showed nothing wrong, even after testing positive for Colon Cancer (M2-PK stool test).

For many years I've been fighting to be heard. And because I'm obese (most of the weight gain is unexplained), I'm not listened to. Every problem I have are because I'm overweight and the doctors just are not interested in trying to find the cause. For the first time in forever I think I am right, all the symptoms fit together in one diagnosis. But I cannot get a doctor who is willing to help.

Am I just crazy and paranoid - or am I onto something? I don't want to waste anyone's time here. I don't want to have this, but if I do I want to know it, want to try and fix it and want to prepare for what lies ahead. Thank you for your time.