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@hopeful33250 @sharik I will certainly share updates. I do have another question (probably more to come too). I have an appointment set with an endocrinologist here locally. Originally this was set up to start me on preop meds, when they thought it was a pheo and a local doc was possibly going to do surgery (I had lots of questions b4 I would have let that happen.) Anyway, since it is a para instead and they are going to refer me to Mayo, should I follow through with this endo appointment? My blood pressure has only been slightly elevated, not enough I feel to require meds. However, if the meds can help control potentially dangerous spikes due to episodes, I think maybe I should follow through with the appointment. Then I wonder if the doc will know enough about para to prescribe the correct meds. So I go back to thinking I should just wait for any more appointments until I can get to Mayo. Lots of info there and I realize the right answer may be hard to determine but I would appreciate any experience, thoughts, etc.. on this.

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Replies to "@hopeful33250 @sharik I will certainly share updates. I do have another question (probably more to come..."

I was lucky in the fact that my primary doctor realized something was wrong, did scans and determined it was a para, referred me to a vascular surgeon, who referred me on to Mayo, all within a few days. But the surgeon did order a 24 hour urine test, which the endo at Mayo had me redo. So my gut says to just have them do the referral and then let the Mayo doctor(s) have you do the tests they want. I also didn’t have any blood pressure spikes or anything so going on meds wasn’t really an issue. If you are having trouble with that then I would keep the endo appointment. If possible I am going to try to send you a private message with my phone number if you want to talk/text. I remember how overwhelming it was when I was first diagnosed and everything I read on the internet either confused me or terrified me. But I had a great outcome and am doing well! Para eviction December 2016 😃

Just go to Mayo and follow their indications. As many have said, they do their own test. I would suggest to get an appointment and follow what they say. They are experts and paragangliomas are kind of rare.