3 MRI's and 2 MIBG's cant find Pheochromocytoma. What next?

Oh my… I honestly dint know much about oncology, but I wonder about the blood test… is it exclusive to that one type of cancer, or can it be indicative of something else? You say this has been unresolved for 7 years… when it was initially diagnosed, did the radiology studies find anything then?

You might want to see if there is a specialist or center with experence in this particular condition that might give you a second opinion.

I am sorry to hear that you’re dealing with this, and hope that they get you diagnosed promptly so appropriate treatment can be started! Good luck!

(positive jelly energy being sent your way)

7 years ago, It was diagnosed at the Cleveland Clinic and they did all the same stuff and blamed my medication for not being able to find anything. This time it was at the OSU James Cancer clinic. The tests are very specific, but apparently pheo’s are notorious for being sneaky.

It certainly sounds like a rare bird; I am keeping everything crossed that I can…Are there any online forums where you can share info and questions with other people with the same rare cancer?

Sending positive thoughts your way!

Hi, had 2, 24 urine collections, both showed high amounts of Noradrenaline and catecholamines. had a third urine collection over 3 days and this also confimed, the probability of a pheochromocytoma, I have since had, a MIBG test, 3 MRI tests and a PET gallium test, all of which have shown nothing, which as this has taken over the last three months of life including Christmas, i am glad their over. Now i have an appointmenyt to see the consultant in two weeks, and although i was asuured by the doctor over the phone of my results, i’m still a little worried. My bp has came down, on the four different types of bp meds, one of which i take twice a day quite alot from 200/130 to at worst 173/100, but my pulse when relaxing is still around 110–125. And i am still suffering from panic attacks and tremors. What other tests could they possicbly want to do. and if the tests ive had show nothging what is going on?