I was just diagnosed with this triad (EDS, MCAS, hyperPOTS) a few months ago after a very long struggle with what I thought were long covid symptoms. Im so grateful I was able to finally get in to a specialist who knows extensively about POTS and other types of dysautonomia. I think I may have the vascular type of EDS because I meet the criteria for it, but its a very long wait to get into a genetic counsler. My appt isnt until September, and even then shes only going to go over my medical history to see if I meet the criteria.. which looking at it all myself, I already know I do. But the neurologist who just diagnosed me believes it may just be hypermobile type that is just worse than most. I had extensive complications during my daughters birth and lost so much blood from severe tearing internally, and had to get sewn back up from the inside out and get multiple transfusions. Along with having one of the major criteria, I meet several of the minor ones also. But it has caused a lot of the other secondary illnesses like mcas, autonomic peripheral neuropathy, and the pots. I know now like u, I normally have low bp but during the surges, my vitals go sky high and I end up very dehyrated as a result. Er drs never took me serious and labeled them as panic attacks. But those do not last for hours straight like mine were. It would come in waves too at times so sometimes Id be in that state for 4-6 hours easy, if not longer. My neurologist told me they were NOT PANIC ATTACKS by definition because panic attacks last minutes not hours. And she said they were autonomic storms. It makes me angry how long I kept being misdiagnosed due to my previous anxiety diagnosis. They see that in your chart and dismiss everything else as just anxiety, when the reality is the anxiety is ONLY SECONDARY to the EDS that causes the autonomic nervous system to malfunction. Its common sense to me now after all my research but it makes me angry how many medical ppl neglected me and didnt ever do any kind of testing before saying its anxiety. Especially since the worst of my symptoms started after covid and as soon as u went to the er with so called long covid symptoms, drs looked at u like u were making it up. Thank you for these videos! I just found your channel this morning. And hearing others stories makes me feel so validated cuz im not the only one going thru this.
I was just diagnosed with this triad (EDS, MCAS, hyperPOTS) a few months ago after a very long struggle with what I thought were long covid symptoms. Im so grateful I was able to finally get in to a specialist who knows extensively about POTS and other types of dysautonomia. I think I may have the vascular type of EDS because I meet the criteria for it, but its a very long wait to get into a genetic counsler. My appt isnt until September, and even then shes only going to go over my medical history to see if I meet the criteria.. which looking at it all myself, I already know I do. But the neurologist who just diagnosed me believes it may just be hypermobile type that is just worse than most. I had extensive complications during my daughters birth and lost so much blood from severe tearing internally, and had to get sewn back up from the inside out and get multiple transfusions. Along with having one of the major criteria, I meet several of the minor ones also. But it has caused a lot of the other secondary illnesses like mcas, autonomic peripheral neuropathy, and the pots. I know now like u, I normally have low bp but during the surges, my vitals go sky high and I end up very dehyrated as a result. Er drs never took me serious and labeled them as panic attacks. But those do not last for hours straight like mine were. It would come in waves too at times so sometimes Id be in that state for 4-6 hours easy, if not longer. My neurologist told me they were NOT PANIC ATTACKS by definition because panic attacks last minutes not hours. And she said they were autonomic storms. It makes me angry how long I kept being misdiagnosed due to my previous anxiety diagnosis. They see that in your chart and dismiss everything else as just anxiety, when the reality is the anxiety is ONLY SECONDARY to the EDS that causes the autonomic nervous system to malfunction. Its common sense to me now after all my research but it makes me angry how many medical ppl neglected me and didnt ever do any kind of testing before saying its anxiety. Especially since the worst of my symptoms started after covid and as soon as u went to the er with so called long covid symptoms, drs looked at u like u were making it up. Thank you for these videos! I just found your channel this morning. And hearing others stories makes me feel so validated cuz im not the only one going thru this.
I have very similar symptoms. How did you get the diagnosis??? I need help😢