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About Momto3EDSAutonomiababies

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  1. I found this site a few days ago, and I happen to read your post from last year about your daughter. It made me want to sign up, so here I am. My oldest daughter has dysautonomia, POTS and now looking into EDS. It has taken six years for a name of what could be wrong.  She has so many symptoms that when I read about your daughter it hit a nerve with me, as mine as sooo many symptoms too and more pop up daily.

    1. DizzyGirls


      So sorry to hear about your daughter.  It's tough.  You never know where all these symptoms fit.  So many doctors, and I don't mean your PCP, but specialists haven't got a clue.  I've got a ton of posts, are you referring to the vertigo or one of the other ones?  She's had chronic vertigo since she was 12-1/2.  Her sister, also.  So, it does appear to be genetic, as my mom has it, but not to the degree the girls do.  They were both diagnosed last November, actually, it's a year to the day, at Stanford's autonomic clinic.  Got a definitive diagnosis for EDS type III and POTS.  Already had a diagnosis from another neurologist for Dysautonomia.  My oldest has recently developed a condition called Erythromelalgia or Man on Fire Disease.  It's where the blood vessels in the hands and feet (primarily) dilate too much and turn red.  The sensation is as if your hands and feet were on fire.  Hers travels up her arms and legs and pretty soon her whole body feels like it's on fire, literally.  Her body is hot and we use a lot of wrapped ice pads to cool her down.  It's not under control, we've just talked with her hematologist about this and she's trying to get her some compounded creams and meds to get this calmed down.  Always something.  We just always hope we can make it through the night without having to go to the ER.  

      I've done a ton of research, so if you have any questions, please feel free to message me! 

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