NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts. › Reply To: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts.
Thank you for your help. I should let you know my son is 19 years old, so he is technically an adult. But yes, it scares him as well as me when he has these breathing issues. I did tell my doctor a year ago about an episode just like this….he just stares blankly and moves on. We did also share this with our new internist along with the long list of other symptoms, and she has sent us out to specialists, and so far each specialist has proven not to be willing to look beyond their already determined scope of practice. So we have given up on docs that don’t already know EDS or dysautomnia. I am waiting for the EDS conference and then hope to get a doctor referral for someone who already has experience in this area.
I like your idea of posting them a letter first, that way they can read it before they enter the room! : )
Oh, sorry about the age gaff! but never-the-less he’s still a young person, whose life-style is being governed by this ailment, it makes my heart sad. I at least have managed to have an enjoyable active and fruitful life prior to becoming symptomatic but when I see my grandson (who’s just coming up to 6 years old) struggling to play with the other kids, I weep inside.
Something else I meant to pass on, about all of the weird symptoms we suffer, maybe video an episode and show that to the doc ? I’ve had to do that.