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Dr. D. Love
Dr. D. Love, Doctor
Category: Neurology
Satisfied Customers: 17510
Experience:  Family Physician for 10 years; Hospital Medical Director for 10 years.
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I have Ehlers-Danlos as well as Dysautonomia that is fairly

Customer Question

I have Ehlers-Danlos as well as Dysautonomia that is fairly bad and I have major Tachycardia, sweats, POTS, etc. The doctor just ordred Plasma Metaephrines and my NORMETANEPHRINE values are 3.55 Range is .00-0.89 while the metaphrine is within normal limits. I read that a false positive would not be 4x high. What is the next move?
Submitted: 1 year ago.
Category: Neurology
Customer: replied 1 year ago.
The doctor believes I have a form of hyperadergenic Dysautonomia and my Ehlers Danlos is hypermobile The major Dysautonomia SX started in 2008 after I battled a sepioc Klebsiella in my knee later thought to be a result of eroded and infected transvaginal mesh. I since had to have the knee replaced from all the damage.In 2010 they discovered a sympomatic Tarlove Cyst at S-3 with nerve injury to the bladder that had to be removed. That same year they had to do two surgeries, one to remove Later I was involved in a massIve MVA THAT
Customer: replied 1 year ago.
2010: 2nd surgery to remove the eroded/infected mesh they could find and later another surgery to repair the bowel with a sphincterplasty and then the wound completely dehesiced and I also contracred MRSA. 2011, I had a coccyxegectomy for a shattered tailbone which also dehesiced and infected, along with pneumonia and Kidney stones from severe hyponatremia. 2012 I was in a massive MVA; Shattered laft pelvis, ruptured spleen, liver lac, fx left tibia, and head injury. I no sooner got on thr road to recovery and in 2013 my artificial knee infected causing a removal, heavy antibiotics, and spacers for 5 months. New knee revision was done, but my ligaments that they shortened and repaired stretched out again destabilizing my leg, but before it could be revised again the mesh became an issue. It had eroded into the bowel wall,almost cut the urethra in half and they had to undo the bladder repair, slingplasty etc. Finally in February of this year the knee was revised and fully constrained.Needless to say this has wreaked havoc on the Dysautonomia especially with all the massive, multiple antibiotics which also caused a systemic Candida infection. Twice a 5-HIAA 24 Hour Urine they couldn't complete due to interfering substances so it was nwver followed up on or figured out the issue.VMA and HVA normal, Bence Jones total urine slightly, low, they detected Alpha 1 and 2 as well as beta and gamma.Those last tests were dome a year ago. Also for the first time my ANA are slightly positive and speckled.
I think that is a somewhat more complete picture of my most recent problems of the Dysautomomia workup other than some cardiac tests and an EEG and nerve conduction which were fine.
Hope that helps give a clearer picture and so I am left with the concern of this latest test.
Expert:  Dr. D. Love replied 1 year ago.
Hello from JustAnswer.
You are correct that false positives are typically not this elevated, but many doctors will also perform testing via an alternate method to assure that the levels are consistently elevated. It can be done via repeated blood testing or by testing of a 24 hour urine specimen.
The usual next step in the evaluation of an elevated metanephrine level would be to perform a CT scan as an imaging test to look for a source of the elevated level.
If I can perform any further information, please let me know.