Stitches Posted February 25, 2023 Report Share Posted February 25, 2023 I was recently diagnosed with dysautonomia. I was also tested for connective tissue disease. I have an elevated ANA and ds DNA but no other significant lab values to determine a specific connective tissue disease. I am not diabetic. I was originally informed that dysautonomia was secondary to another disfunction. I was involved in a trial from Mayo Clinic on hypercholesteremia. In that DNA testing it came back that our family ancestry as 8.6% Ashkenazi Jewish and in reading dysautonomia can be familial, especially in this blood line. When I contacted a National Dysautonomia Association I was told that these symptoms start at birth and progress rather quickly. My question is can Dysautonomia be familial and show up in later life? We feel my father had components of this, I have 1 brother and 1 sister that also show components and now my daughter is experiencing some components. I am 65 years old and female. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 25, 2023 Report Share Posted February 25, 2023 10 hours ago, Stitches said: My question is can Dysautonomia be familial and show up in later life? There are three generations of females in my family ( mother, myself and 2 sisters, 6 nieces, 1 cousin ) that are diagnosed with HPOTS. My mother and sisters and I became symptomatic ( to different degrees of severity ) later in life ( I at 42, the others early 50's ). In retrospect we all had symptoms all of our lives but they were always dismissed as anxiety, stress or ( I love this one ) " poor circulation" . My nieces ( in their 20's and 30's ) all have some aspects of POTS but not yet severe. My daughter ( 18 ) also had problems with tachycardia and fainting as well as cold hands and feet all of her life and - although not diagnosed - is believed to have POTS. She does not want to get tested for it yet because she can manage so far with fluids and salt and avoiding long periods of standing. I am originally from germany and my ancestors got displaced during the war, so I am not sure of the ancestral DNA, but we were told that it is either a genetic problem or a missing enzyme/transmitter that causes the dysfunction. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted February 26, 2023 Report Share Posted February 26, 2023 I’ve had my whole genome sequenced, and there is a novel finding of unknown significance in there, related to familial dysautonomia. My mother and sister have some elements of my health problems, too. I was told the same thing - it would have been severe enough to be discovered by my teens if it was FD. But it’s interesting. They are going to sequence me again twice a year in case they learn more about these genes. Quote Link to comment Share on other sites More sharing options...
Stitches Posted February 28, 2023 Author Report Share Posted February 28, 2023 Thanks for your comments on my post. I too feel I have had some type of symptoms most of my life. I had flares I know in my early 30’s and on and off since then. I can’t find physicians here that really know anything about this. And sometimes I feel my family doesn’t even understand. I really do feel this runs in families and wants to help my family members too. Quote Link to comment Share on other sites More sharing options...
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