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Did you have difficulty determining if your para was active?

Posted by fas @fas, Feb 12 1:40am

I have a 3cm Paraganglioma in the Carotid artery of my neck. Just over one month ago I went to ER as I knew something was seriously wrong - extreme dizziness, nausea, severe headache, abdominal pain, numbness in right arm and fingers. As a result of my insistence that something major was wrong and after many doctor visits and imaging the Para was found.
The next step apparently is to determine if it is active. My blood plasma test came back negative for metanephrines and I am still waiting for the results of the 24 hour urine test.
With all my symptoms - surely it must be active though?!!
How can I prove it is active?
Are there any other tests?
I would appreciate any advice

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elgie17 | @elgie17 | Feb 12 11:44am

Hi. Did they test you for catecholamines as well? I also have a neck para in my right carotid artery. Mine secretes dopamine, 50 times normal. And for 2 years we thought it was not secreting anything as they only sent me for metanephrines and only for 24 hours urine, rather than blood plasms.

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fas | @fas | Feb 12 6:23pm
In reply to @elgie17 "Hi. Did they test you for catecholamines as well? I also have a neck para in..." + (show)
@elgie17

Hi. Did they test you for catecholamines as well? I also have a neck para in my right carotid artery. Mine secretes dopamine, 50 times normal. And for 2 years we thought it was not secreting anything as they only sent me for metanephrines and only for 24 hours urine, rather than blood plasms.

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@elgie17 Hi, Thanks so much for all your responses. We are part of a very exclusive club sadly and it's so great to be able to chat with someone who has the same thing (although mine is on my left carotid artery). I honestly don't think the first test was done correctly. When I researched it there were very specific instructions that I know were not followed (the first instruction being to use a chilled tube and I saw her pull all the tubes from a cart right in front of her, nothing was chilled!) I mentioned this to the endocrinologist today and he has ordered 'new' tests which I suspect might be the one I should have had initially and the reason why I got the negative result. But that request was made by my GP before we had the Para diagnosis so it's not really anyone's fault. You just have to be SO on top of everything, it's exhausting and frustrating at times 🙁
In addition to the new plasma draw, I am going to do another 24 hour urine test. So this makes me happy that we are doing everything to try to figure out if it is secreting or not. It is apparently vital to know this before surgery so that you can get your body back to 'normal' before surgery if the tumor is secreting.
Have you had surgery?
How big is your para?

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