Ontrack1 Posted May 16, 2005 Report Share Posted May 16, 2005 Does anyone know of any instance of Brain or Heart biopsies after death in a patient with dysautonomia? If so, did the results show anything abnormal? Quote Link to comment Share on other sites More sharing options...
Kite#7 Posted May 16, 2005 Report Share Posted May 16, 2005 Hi , Having a tough day tody and it remined me of a couple things relavant to this . First my Wife doesn't think I have either so an autopsy should be a moot point and a friend O' mine told me the other day he knows what to tell the doctor next time I go TO EMERG -- If you don't know whats wrong than I 'm already dead just to stupid to lay down !!! Slainte' Kite 7 Quote Link to comment Share on other sites More sharing options...
Ontrack1 Posted May 17, 2005 Author Report Share Posted May 17, 2005 enjoyed the humor.that was a good one Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 17, 2005 Report Share Posted May 17, 2005 Ontrack-- a member of this forum, Ernie, donated her brother's remains to the US National Institutes of Health. Perhaps she can let you know if they found anything unusual.I've had so many tests that look at structures of the body, I highly doubt they'll find any structural issues--I've had CAT scans, MRI's, PET, MUGR, HIDA, scans, Sonograms/Ultrasounds, doplers, etc.--of nearly everything except my feet and hands.I think that if they consistently found abnormalities in our group of disorders, that would have been reported repeatedly in the literature by now--it's possible we have abnormalities that are an the nerve/trasnmission level that aren't easily seen yet. Pet scans of the heart haven't yet revealed a problem with nerve migration, and/or activity (I participated in a study at NIH on this).Nina Quote Link to comment Share on other sites More sharing options...
briarrose Posted May 18, 2005 Report Share Posted May 18, 2005 It's interesting but I wonder what the results would be if they could perform the scans while You're standing up ? Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 18, 2005 Report Share Posted May 18, 2005 I was standing during the MUGR and the HIDA scans. Nothing abnormal was seen--not even the lower limb pooling that they expected on the MUGR (a heart scan).Nina Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 18, 2005 Report Share Posted May 18, 2005 Oh, and I forgot to mention that some places offer FMRI (functional mri), where you are upright, or in any other functional position that sets off symptoms. Also the dopplers were done on me while I was upright to make sure the blood flow in my larger veins and arteries were normal. My heart study at NIH included a cardiac catheterization--and used a lower extremity vacuum to emulate standing. My structures were fine, but I pumped out a bucket full of norepinephrine and then there was none. Structurally, I'm "perfect", but neurochemically, I'm way out of whack. Nina Quote Link to comment Share on other sites More sharing options...
briarrose Posted May 19, 2005 Report Share Posted May 19, 2005 Hey MightyMouseThank you for that information. I haven't heard of those tests being done upright so I'm a bit surprised. Very good information to know and pass along. I'm not at all familiar with the MUGR. My norepinephrine test was done whileI was laying down so I'm wondering about the real results of that. Quote Link to comment Share on other sites More sharing options...
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