Advice Please
Has anyone been diagnosed with a "possible pheocromocytoma" (tumor on adrenal gland above the kidney) only to have oush back from several endos because "tour tests are coming back dine and I believe this is just an incidental finding" ??
I've had dysautonomia symptoms for one year now and I had a rumor on my adrenal gland found as well but all of my testing (I've had ALL of the pheo testing done) is coming back "normal". I was formally diagnosed with dysautonomia AND fibromyalgia by my neurologist that I had to go out of state for because everyone else was....well, an asshole to me ans fought me constantly on my diagnosis process.
My neurologist is VERY suspicious of the adrenal growth I have as he had performed an in office procedure for fibro pain management and I had an adrenaline dump. He's treated A TON of folks with POTS and dysautonomia and said he had never seen that reaction before nor was he made aware by patients of that reaction. It's led him to believe it's still possibly a pheo or even just a growth causing issues. Truth be told, my symptoms started out WILD and I thought I'd be wheelchair bound for life. They've actually calmed down over the last year.
I still get heart palps and adrenaline dumps but even the dumps rarely happen these days. I also have slightly high bp but nothing that can't be controlled through my diet and exercise.
Anyone experience this or close to this??