Wmtate Posted June 24, 2014 Report Share Posted June 24, 2014 I was asked if I would do a thermal test in supine position to see if it will lower my b/p and also will do a MRI of a particular spot in the brain to see if I have metal in that area of my brain. Interesting research Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 24, 2014 Report Share Posted June 24, 2014 Can I ask what exactly the metal is they're looking for? And, is this random, or do you have a certain issue that causes them to look for the metal? Quote Link to comment Share on other sites More sharing options...
Wmtate Posted June 24, 2014 Author Report Share Posted June 24, 2014 I just have plain and simple PAF and nothing more. I think they are simply taking people with our problem just to check it out. Maybe they have been doing autopsy research and found metal in some of the corpse in a particular part of the brain. I do not know and it only takes 1.5 hrs. I do not know even if they will let me know or what it indicates. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 24, 2014 Report Share Posted June 24, 2014 Thanks. The reason I ask is because I have on 2 occasions been found to have high free copper. I was testing things for Wilson's Disease, and even though my copper and ceruloplasmin themselves were normal, the calculation for free copper came out high. All i know is high copper can possibly deposit in the brain. So that's why I was asking! Please update us IF they do explain it to you during your testing. Quote Link to comment Share on other sites More sharing options...
corina Posted June 24, 2014 Report Share Posted June 24, 2014 Good luck! Quote Link to comment Share on other sites More sharing options...
targs66 Posted June 24, 2014 Report Share Posted June 24, 2014 Good luck with the tests at Vandy. (I applied as a volunteer some time ago, but didn't get a response, maybe b/c I have neurally mediated hypotension, not POTS.) Please do update us with your experience and results! Quote Link to comment Share on other sites More sharing options...
Wmtate Posted June 26, 2014 Author Report Share Posted June 26, 2014 I arrived at Vanderbilt about two hours ago and" thermal" supine b/p test starts tomorrow (6-26-14) and also 6/27/14. The MRI for the particular spot in the brain to test for metal will be early Friday morning. I almost hope they do find metal. I guess it can be removed by chelation. Don't know for sure what the plan would be if they find metal. They must know something to even be testing me for metal. We shall see!! Quote Link to comment Share on other sites More sharing options...
Wmtate Posted June 26, 2014 Author Report Share Posted June 26, 2014 They took blood, EKG, temperature, and during the night b/p check every two hours, and collected all urine last night. I got up 15 times to urinate. Volume range was from 40 to 90 cc per trip. I do not know why I went so many times. I normally go 2 to 3 times a night. My systolic b/p ranged from 130 to 180 thru the night. They did install a patch with a med or placebo. At 11:00 am today I will do the first thermal test, to check if my supine B/P will drop by heating my mid section with a heating pad. The second test will be tomorrow plus the MRI brain scan for metal in a certain spot in the brain. I lost 2 lbs during the night from going to pee too many times and dizzy while standing this morning. Will give you other data as I go forward Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 26, 2014 Report Share Posted June 26, 2014 Thanks for your updates! Quote Link to comment Share on other sites More sharing options...
Wmtate Posted June 26, 2014 Author Report Share Posted June 26, 2014 The thermal test today , which I thought was a heating pad on my stomach and take blood pressures was most extensive test I have ever done. Three hours and twenty minutes. I, for some reason mis understood the MRI test. It is not for metals. It is to read the chemicals that control b/p and heart rate. They think mine is external damage but wants to just check me to see if it is actually in the brain. In the future an MRI will DX future patients they think with autonomic problems. If it is in the brain, I did not ask them if it could be fixed. I always thought it was in my brain, we shall find out tomorrow Quote Link to comment Share on other sites More sharing options...
Wmtate Posted July 1, 2014 Author Report Share Posted July 1, 2014 Have not heard anything yet but not sure if what I did was nothing but a base line for test in the future. Other words establishing a base line Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 1, 2014 Report Share Posted July 1, 2014 Interesting. If it is for baseline only, then you may be coming back for more future appointments. Quote Link to comment Share on other sites More sharing options...
Wmtate Posted July 1, 2014 Author Report Share Posted July 1, 2014 Rachel, I think that will be my last time. I volunteered in 1994 and stayed 9 days, again in 2010 and stayed 5 or 6 days. I think I was the fourth to test for the MRI chemical levels and the thermal test and they need 10 to get a good level. They cannot use anyone on anti depressants and 80% of people who have some of our troubles are on such drugs. Once they establish levels, then they can use the MRI to DX. Will not be a maybe but for sure DX. Quote Link to comment Share on other sites More sharing options...
corina Posted July 1, 2014 Report Share Posted July 1, 2014 Thanks Wmtate for letting us know which tests you take part in and keeping us updated! Quote Link to comment Share on other sites More sharing options...
S2014 Posted July 2, 2014 Report Share Posted July 2, 2014 Wmtate, I'm planning to go to Vanderbilt for POTS research trials in September. As I understand it, I will be admitted to their research clinic and monitored 24/7 in addition to testing for each trial. Have you had a positive experience there? Any recommendations? Thank you in advance! Quote Link to comment Share on other sites More sharing options...
Wmtate Posted July 6, 2014 Author Report Share Posted July 6, 2014 They treated me like a king Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 7, 2014 Report Share Posted July 7, 2014 Glad to hear that you had such a positive experience. These research studies can be time consuming but worth the effort if you can tolerate the situation.Will they tell you any of your results? Quote Link to comment Share on other sites More sharing options...
corina Posted July 7, 2014 Report Share Posted July 7, 2014 Glad you were treated so well, you deserve it! I'm very thankful to everyone who's willing to participate in studies, it helps us find answers! So thanks a lot Wmtate!!! Quote Link to comment Share on other sites More sharing options...
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