HCD77 0 Posted November 3, 2020 Report Share Posted November 3, 2020 Hi everyone, It’s the appt I have been waiting for !!! I had 2 days of many autonomic tests last week . Tomorrow I find out the results . Does anyone have any questions , tips or advice when talking to my specialist. I’m so ready to get to the bottom of my symptoms and get treatment, so I can have a better quality of life. Thank you 😊 Quote Link to post Share on other sites
KiminOrlando 0 Posted November 4, 2020 Report Share Posted November 4, 2020 Get copies of everything. It will take time to absorb the info. So much will be thrown at you at once. Quote Link to post Share on other sites
Delta 0 Posted November 4, 2020 Report Share Posted November 4, 2020 @HCD77, If you haven't already planned for this, get someone to go with you, a trusted friend or family member. Because as @KiminOrlando said, a lot *is* going to come at you at once. The friend will be able to pick up on things you may miss and maybe even ask some questions on the spot that you won't think of. The doc may also choose their words a bit more carefully when they see you have an advocate there. And both of you take copious notes. GOOD LUCK!! Quote Link to post Share on other sites
HCD77 0 Posted November 4, 2020 Author Report Share Posted November 4, 2020 He said I was in the gray zone for POTS my heart rate went up 27 beats . I’m so discouraged. Why do I feel so bad and have all the symptoms of POTS or some dysautonomia? All bloodwork and tests were fine. Why do my feet turn red etc. Has anyone fallen through the cracks like me ? He is going to start me on low dose of midodrine . I’m so sad I haven’t found an answer . Quote Link to post Share on other sites
RecipeForDisaster 0 Posted November 4, 2020 Report Share Posted November 4, 2020 All I can say is I feel your pain.... haven’t found anything much on testing but I’m on lots of meds anyway. Genetic testing does show a novel abnorality. I’m doing autonomic tests again tomorrow. Hopefully the midodrine will help - I find it does to some extent, I just can’t handle a big dose. Quote Link to post Share on other sites
KiminOrlando 0 Posted November 4, 2020 Report Share Posted November 4, 2020 Was your norepinephrine normal? Quote Link to post Share on other sites
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