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Some Answers Would Be Good!


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When my son was in hospital last time, his gastroenterologist was trying to sort out some absorption issues to do with Mitch's J tube and decided to do a CT scan.

This was about the one millionth test he's had, so everyone was very surprised when it showed a 2cm lump near his adrenal gland.

He suddenly became very symptomatic 18 months ago following a sympathectomy for knee pain and has been bed- ridden all this time.

His dr's are now testing for phaeochromocytoma and even though the 1st round of urine catecholamine levels were normal and had just small increased levels of gastrin and cortisol, they still are going to do a MRI and MIBG scans. We are still waiting on plasma results.

I?m only guessing, but they must feel the CT findings and the symptoms warrant serious investigating.

His symptoms just don?t seem to ?fit ?anywhere. His Neurologist describes him non classifiable and so far, no medication has made the slightest improvement, so we are welcoming any light shed on this.

He has just turned 20 and missing out on so much!

I?m interested to know if anybody else has had a similar experience.


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i went through years of "normal" testing.

i had an mri show a 4mm cyst in my kidneys that mysteriously disappeared on the next mri. i think i would have felt passing something that size.

in other words, get the films and reports and get a second opinion. you have that right. but get everything u can from the tests. i think what is going on with your son needs a second or third person to look at it.

that's all i can offer. hope u get help soon.

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Thanks Firewoman for your reply. Wow, I think you you certainly remember passing something 4cms Lol

This is actually the 5th or 6th second opinion, if you know what I mean.

As with most people on this site, it took a long time for him to be diagnosed with dysautonomia. We were all getting used to what that means, long term, and then to be told that it is perhaps something different entirely. It sort of makes it hard for the whole family to cope.

He's scheduled in go into hospital on the 10th Sept for the MIBG and the MRI, so I'll guess it might get to the bottom of it. :lol:

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