ongoing tests for carcinoid

[kezawallace]

Hi i have been suffering now for 9 months with persisitent diarrehea, intermitent flushing and i cant even walk up three flights of stairs withour wheezing. I have had numerous tests, which all except my gut hormone blood test have come back showing no diagnosis.

I had a colonoscopy , then a barium follow through which was literally coming out of me in 15 minutes, the doctor gave me some water and asked if i was asthmatic as i am very raspy and wheezing, he also noticed a ref flushing on my chest and face. and said he though he knew what it was - hence the gut hormone test. My chromogranin A is abnormal so i ws sent for a CT scan which i have been told wouldnt show a carcinnoid tumour or it was highly unlikely to. I was also told i had a thickening on my colon which i should not worry about. There are days i am so sick that i cant get out of bed and i always need a toilet nearby.

I have been told i need an Octetride scan now, oh and i had the 5HIAA which i was told was normal, but noone told me to avoid certain foods and drrinks and to keep it in the dark as 5HIAA is light sensitive.

I hope somone out there may be able to give me some hope and you dont think i am moaning i just would like to talk to somone who may think i am not going round the bend. I do also get pain in my abdomen which is getting worse as times go by.

Anyone help me PLEASE.

Kerry wallace

email ***@****


This discussion is related to carcenoid syndrome.

[CalGal]

I'm sure no one thinks you are complaining, or that you're 'going round the bend.' Trying to get a clear picture of what is going on with your health can be difficult even in the best of circumstances and in the case of carcinoid it can be doubly difficult since it can be very difficut to diagnose, unfortunately.

I'd like to suggest that you might want to try some of the support groups/boards that have been set up specifically to allow persons with carcinoid or suspected carcinoid to interact. I'm sure that others on those boards know a heck of a lot more about the process of diagnosis and coping with this problem than many others. There are some wonderful boards dealing with this problem. I'd love to be able to give you a link, but it seems that when links to other sites are posted it's frowned upon and the information that's provided is deleted from the post. But if you goole something like 'carcinoid support groups' you should come up with at least one source.

Kerry, you're not alone - and you're not nuts or moaning.

[kezawallace]

Thank you so much for your reply, I will try that. I have looked and looked , today and found some sites that i think may help. Thank you again.

Kerry