I most definitely have heard of it!! I get the symptoms a lot but I don't bring it up with my doc he already thinks I am crazy. I would get no where. I do see him in 10 days or so. I have no idea why he wanted to see me a month after I already had seen him. He tells me nothing. I plan on printing out the record I have of him saying he doesn't know why I can't breathe when I am laying down but I have several psychiatric diagnosis. I may write a letter to him and ask him to read it latter and bring that up and poke around my medical records some more to find other things he may have said. Haha, I've become a rebel rouser but I will stand up for what I believe is right or wrong. I've graduated from the school of hard knocks. I think for sure I will bring up to him I think I have chronic fatigues, haha, I'll keep you posted on THAT one!! Think it'll come with my oldest sister writing up what she has seen from me

Oh, my Specialist's name is Dr. Blair Grubb in Toledo, Ohio. He is fantastic! Anyone who thinks they may have this. Start a chart with your Blood pressure and pulse laying, sitting and standing. Especially if you feel dizzy or faint when you stand up or after standing awhile ... Like standing in line for something.

I read an article on Mental Floss today. They think they may have found a gene that is responsible for Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). This should put them on the radar with doctors. So hopefully, (fingers crossed here) we will get some forward movement on relief and eventually a cure!

@A MyChronicPainTeam Member Do it Do it Do it!!!! Keep me posted😊

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A MyChron...

Dr. Blair Grubb
Cardiologist, Specialized in treating POTS
Toledo, Ohio