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Cindygi's Message Board Messages

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Hi, how are you feeling?  Did your doctors find out the cause of your illness.  I'm still having a rough time of it.  Doctors are still leaning towards a carcinoid but still want to rule out other diseases.  I just want them to do the scan at Hopkins instead of all this other crap.  I have had enough and I'm sure a lot of other patients that go through the diagnoising are in the same boat. Well let me know if you had any success with the doctors in Norfolk.

Hi, I did have a repeat of 5-HIAA and it came back High. I have an appt with my Rheum this month to review my latest testing.  I just had another 24 hr ph test to check my acid levels.  My GI doc believes also my issues are somehow conncect to carcinoid.  I think the next test they are going to order is a Scan. At least I feel like my doctors are on the same track.  Hope you are doing well.

On Mar 07, 2018 4:54 PM jsmb234 wrote:

Hi, 

I have been sick for 5 months with flushing, diarrhea, rapid pulse, and now night sweats, tingling/buzzing sensations in my neck and arms, and blurred vision.  My 5-HIAA (urine and blood) were both normal, as were my seratonin levels and Chromagranin A.  Could all of this be possible and carcinoid still be present?  Had a colonoscopy in Dec that showed colitis, but all biopsies were normal.  CT in Dec also normal except for hemangiomas/cysts on liver.  I have been feeling worse and worse and not sure where to turn next.  

Hi, I've been having the same symptoms for many years. Since August it's on overdrive. Been to specialist cardiac, rheumotologist and endro.  Everything has come back negative/normal.  My last appt with my cardiologist really believes I have carcinoid reccommend that I have all tests repeated and go for scans.  So that's my next step. Let me know what you decided to do. Oh he also recommended I go to Hopkins Endrocrinology. He said they have more intense screening.

Carcinoid

by Cindygi - March 31, 2018

If blood tests are negative, will any scans help with a diagnosis to prove I have a tumor. I have flushing, tachycardia, short of breath and diarrhea
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