Pheochromocytoma

[musicmic39]

My 16 year old son has all the physical symptoms of pheochromocytoma however the blood and 24 hour urine are always normal.  His physical activity has become almost non existent due to high blood pressure, extreme pulse rates, headaches which are getting worse and more frequent.  Heat, activity cause the pulse issues, nausea, difficulty breathing.  He was admitted to the hospital for a week with his blood pressure over 200 while they tried to bring it down.  He was on 2 medications and is now on Lisinopril 7.5mg twice a day and his BP is approx 135 to 140 without any activity, pulse is 90+.  My son is very fit, no body fat, difficulty keeping weight on.  He has had CAT scans, MRI's, stress tests etc.  They have ruled out any cardiac problem however they acknowledge that the cardiac area is certainly a symptom.  The stress test showed 5 min into it his pulse was over 200 as was his BP and wished they had the ability to have a volume control on the headset as his pulse was beyond bounding.  We are at a loss and don't know what direction to go but his symptoms are becoming worse ie headaches sporadically are now everyday and becoming more severe and not responding to OTC medication.  We are working with doctors at Riley Hospital (nephrologist) and an endocrinologist locally who works mainly with adults but is willing to work with my son. What else or where should we be going?

[musicmic39]

He has had CAT scans and MRI's of his form his chest to his abdominal area and is having and MRI of his head tomorrow.  He had a renal angiogram and it also didn't reveal anything.  I have tried to figure out what mimics pheochromocytoma however I am drawing blanks.  His symptoms have been going on for over 5 years and potentially longer however his blood pressure was taken rarely so it was diagnosed as asthma until we started to put the symptoms together.  Things are progressively getting worse and his physical abilities are becoming more and more restricted.  Any suggestions would be greatly appreciated.

[sweetpea03]

I'm sorry to hear about the problems. When you say he's had CAT scans and MRIs, where were they taken? of his head? spine(chest/abdominal)? Pheochromocytoma is extremely rare, and if the test is negative, then I doubt that would be it. I'm not really sure what it can be, there are so many possibilities, though not all the symptoms fit. Don't give up and if need be go to another hospital to have other doctors take a look at him. It might be better to get a fresh pair of eyes on whats going on. Good luck!