sue1234 Posted July 13, 2010 Report Share Posted July 13, 2010 It has been in the back of my mind ever since I read about how many of you here have it. I have alot of the symptoms, but I have to admit they are general POTS symptoms, too. So, I just ordered the test yesterday and thought I just want to know! I have been having alot of vasodilation lately, with hands and feet swelling, with hot flushes. If I get in the sun for even a couple of minutes, my "spots" on my arms and legs get bright red. So, instead of finding a doctor who will look at me like a hypochondriac when I ask to be tested for MCAD, I just did the test myself. I have already been tested for carcinoid, as it has some of the same symptoms, but it was negative.I know how I am--if it comes back positive, then I will be on a new pursuit of WHY did I get this?!?! Quote Link to comment Share on other sites More sharing options...
juliegee Posted July 13, 2010 Report Share Posted July 13, 2010 It has been in the back of my mind ever since I read about how many of you here have it. I have alot of the symptoms, but I have to admit they are general POTS symptoms, too. So, I just ordered the test yesterday and thought I just want to know! I have been having alot of vasodilation lately, with hands and feet swelling, with hot flushes. If I get in the sun for even a couple of minutes, my "spots" on my arms and legs get bright red. So, instead of finding a doctor who will look at me like a hypochondriac when I ask to be tested for MCAD, I just did the test myself. I have already been tested for carcinoid, as it has some of the same symptoms, but it was negative.I know how I am--if it comes back positive, then I will be on a new pursuit of WHY did I get this?!?!Sue,HOW do you do the test yourself??? It's a blood test, right? Do tell!!! BTW, it doesn't rule out (or in!) MCAD. Instead it can rule out mastocytosis. It's a great place to start in your quest. Let us know what you find out!Julie Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 13, 2010 Author Report Share Posted July 13, 2010 Julie,I Pm'ed you about it. Quote Link to comment Share on other sites More sharing options...
issie Posted July 14, 2010 Report Share Posted July 14, 2010 Julie,I Pm'ed you about it.Sue,Don't just PM. I want to know too. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 14, 2010 Author Report Share Posted July 14, 2010 You can order your own labs on the internet. I've done this for a few years. With a weird symptoms, I have tested what the doctors have not thought of. Quote Link to comment Share on other sites More sharing options...
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