issie Posted December 24, 2011 Author Report Share Posted December 24, 2011 WOW, Anna - how'd you find that? It's so interesting a theory as to what could be happening. I don't know. I've had the function of my adrenals checked in the past and was told the numbers were okay. But, there always seems to be signs of dysfunction there. I've had to use cortisol in the past because mine was too low. Interesting that the article talked about Neuorfibriomatosis 1 - I talked to a doctor at Life Extension Foundation and was told that all the cases he'd seen of POTS this was the reason in the long run of testing. I have small tumor like things (docs are calling them lypomas) all over me and can't get a single doctor to address why. I don't know if this is the cause or not. Also, the article spoke of liver lesions - (don't think that's the wording they used) and I have that too. Maybe you're on to something.Has anyone had this checked out before?Poor baby, hope he is better with the peeing blood thing. There is so much that goes wrong with us when we have EDS and POTS too. We just have a double - sometimes triple or more whammy's. You're such a good mom - trying to get down to the why's of it all. I commend you for that!! Keep on researching and share it with us. Maybe we'll come up with reasons for some of this.Issie Quote Link to comment Share on other sites More sharing options...
issie Posted March 19, 2012 Author Report Share Posted March 19, 2012 Just bumping this since it seems to be a topic of discussion lately.Issie Quote Link to comment Share on other sites More sharing options...
jangle Posted March 19, 2012 Report Share Posted March 19, 2012 Today I felt pretty much fully recovered from POTS for a few hours and now that it is noon time (my worst time) I'm feeling slightly bad again, but I'm around 80-90% improved still. The Losartan seems to reduce my symptoms a lot and keep them down even under conditions of stress. It's just I still am getting the day time variance. Quote Link to comment Share on other sites More sharing options...
issie Posted March 19, 2012 Author Report Share Posted March 19, 2012 Glad you're seeing improvements Jangle. Hope it just keeps getting better for you.Issie Quote Link to comment Share on other sites More sharing options...
jangle Posted March 19, 2012 Report Share Posted March 19, 2012 One other thing, Losartan seems to be improving my anxiety symptoms. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 20, 2012 Report Share Posted March 20, 2012 Great news jangle. Please keep us posted. Quote Link to comment Share on other sites More sharing options...
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