ramakentesh Posted November 20, 2005 Report Share Posted November 20, 2005 I found this article that people might find interesting. Its a bit wordie but quite interesting.http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=163970 Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted November 20, 2005 Report Share Posted November 20, 2005 http://spaceresearch.nasa.gov/research_pro...cs_03-2002.htmlThis article may be easier for most folks to read and understand NET transporter problem in a nutshell!Many articles on this subject. scroll down to the last part of this article. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 20, 2005 Report Share Posted November 20, 2005 My understanding is that the owner of the NDRF site has the norepinephrine transporter defect (Linda Smith). Nina Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted November 20, 2005 Report Share Posted November 20, 2005 Yes, Nina. You are correct. Linda and her sibling have been the subject of many journals.Not to mention years ago when the docs from Vandy, I believe, came to her house and all her siblings had to stay there to be 'studied' for several days....wanted to be watched in their daily routines. It was SOMETHING. Quote Link to comment Share on other sites More sharing options...
Guest Finrussak Posted November 20, 2005 Report Share Posted November 20, 2005 question> does this stuff ( and other genetic deficiencies or problems) routinely get checked?? or do you have to be lucky enough to be in the right study pool for that month? I ask because when I mentioned to Dr Grubb that for me even tho we GUESS the Lyme etc plus the EDS 3 made it possible for me to now have dysauto of a few types how do we know I dont have any of the heretible things??? ( which may be fixable with targeted therapies). His answer was that the testing isnt routine and mostly Id have to be in the "right" research study. No one tests the long list of enzyme and transporter deficiencies just "in case">For example...my youngest took part at age 3 ( 13 yrs ago) in a program screening for Gaucher and we found out by accident he was borderline which may have implications later on should sx arise...but had we not done this we would never know, AND who knows what else is lurking in the family genetic makeup!!!Basically...when should we ASK for testing, from where and how??? It seems to me to just treat sx by guessing ( no matter how educated those are) is hit and miss. Quote Link to comment Share on other sites More sharing options...
katie_b Posted November 21, 2005 Report Share Posted November 21, 2005 Thanks for the links!! Quote Link to comment Share on other sites More sharing options...
Guest Belinda Posted November 21, 2005 Report Share Posted November 21, 2005 Thanks for the info. I appreciate it alot. Just learning about all the cool stuff that goes along with autonomic disorders. Quote Link to comment Share on other sites More sharing options...
michiganjan Posted November 21, 2005 Report Share Posted November 21, 2005 Okay, I read both articles. I am confused as always, maybe because I don't have enough blood to my brain!Anyway, if one does have the NET defect, then how does one treat it? If Linda and her family were tested and it is known that they have this defect, then what, if anything, has worked for them? Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 22, 2005 Report Share Posted November 22, 2005 Linda has a pacemaker...and I'm not sure what meds she's been on. You have to keep in mind that they were diagnosed because their symptoms are somewhat different than ours; as I recall, one episode included cardiac arrest for Linda, who was thankfully on a plane full of cardiologists on their way to the NDRF conference.This article may be of some use as well.http://listserv.nodak.edu/cgi-bin/wa.exe?A...re&F=&S=&P=2515Nina Quote Link to comment Share on other sites More sharing options...
DancingLight Posted November 23, 2005 Report Share Posted November 23, 2005 JAN!!!!!!!!!!!!!!!!!!!!!!!!!!I am on the same page as you are! There is NOT enough blood in my brain for all this information! Emily Quote Link to comment Share on other sites More sharing options...
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