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No clear dx from dysautonomia dr

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Pink, Apr 26, 2018.

  1. Pink

    Pink Senior Member

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    I went to a dysautonomia specialist who should be fired and banned from practicing medicine.

    After hours of waiting, the Dr was too busy to tell me or ex explain anything to me, other than to tell me to buy a book or read his website!

    He kept changing his mind if I have Pots or not, said I have sympathetic reflex withdrawal and I'm not sure what else. I tried to ask for explanations of what conditions I have, and how it can be safe to start 3 meds all at once,but again "he has no time."

    He disagreed w former cardiologists that I saw yrs back ; he said I don't have vasovagal syncope.
    and I wasn't clear if he agrees w them or doesn't about my having neurally mediated hypotension.

    His son (who has no medical license) ran a valsalva test (without the tube), a partial tilt test, and an ansar test.
    I have no idea of the results bec once again, he's too busy to talk to me.

    I asked his assistant, she snapped at me to read the website.

    I spent 8 hours on this dr, I'm still sick days after the difficulty of travelling and I have less info than before.
     
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  2. Lisa108

    Lisa108 Senior Member

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    Wow. I'm really sorry that you had to go through this. I hope you will get a doctor's report at least. He should have offered to call you back to inform you of his findings if he "had no time" during your appointment...
    Hope you'll recover soon!
     
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  3. Pink

    Pink Senior Member

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    I asked for a report numerous times, but the office and Dr are so scattered and disorganized I'm sure I will not get it.
    He had time, but zero interest.
    I waited 2.5 hours just to be seen by the Dr! He barely talked to me, everything was "read my website", "read my book".
     
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  4. Lisa108

    Lisa108 Senior Member

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    Well, that lad seems to know how to make money... but he's no good doc.
     
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  5. Pink

    Pink Senior Member

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    Stupid me I believed the online reviews
     
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  6. Lisa108

    Lisa108 Senior Member

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    I'm seeing a specialist tomorrow. High hopes again, yet also the fear of beeing disappointed again. We put so much effort in making it to their offices, just to be let down again... But there are good ones out there! We just have to hunt them down...


    carry on_small.jpg
     
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  7. Pink

    Pink Senior Member

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    I hope it goes well @Lisa108!
    Btw, my Dr absolutely disagrees w my taking the 3 diff meds he wanted me on, esp since we have no clear dx and they are strong heart meds.
    (Sure start a c.f. patient who is crazy sensitive to any med or supplement on multiple meds at a time. I told him it will make me really sick. He didn't care)
     
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  8. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    Screenshot-2018-3-29 Meet Willow, dysautonomia service dog in-training .png
     
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  9. Shoshana

    Shoshana Northern USA

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    Dreadful of that doctor and office.
    :jaw-drop:
    They do sound very scattered , and that their tests and their results might not be accurate or complete, even if/when, you could get any reports from them, which I agree you should nevertheless, demand, in writing.
    JUST in case they say one thing that is informative.

    Even though, from them, it would be surprising if the written report was any more informative than the visit was.
    Arggghghghghgh! :aghhh::grumpy:


    Sounds bad, both how they do their basic medical jobs, at that office, and how they treat people. :mad:

    I am very glad you shared that experience with us, though, @Pink .
    Thank you .
    We do go through these ridiculous-seeming experiences, too, which feel unbelievable, yet , they are true.
    Hopefully it helps you a little, to share it with us, and it helps us, to see that it is not just us, when similar or overlapping doctor visits, happen to us.

    And so very upsetting and discouraging, and confusing, about where do we go from there then???

    I remember telling a specialist (ENT) about the very awful strong cough, that I was having for several hours
    every day for several months (I am a non-smoker, and had only a very small hoarse voice as I spoke to him)

    and his response was, "You have not coughed once since you have been in this room"
    (meaning the exam room, which he had been in with me for about 5 minutes.)
    SO , did that mean he did not believe me??? Whatever he meant, it shut down any further questions or answers about a nearly unbearable throat problem.

    Specialists can be poor, it is not just you, Pink. :(
    Though I AM sorry it includes you!

    The toll it takes on us, is often enormous.
    Plus, afterward, fighting both the increase in aftermath symptoms, in addition to having to doubly fight with depression and giving up.

    But, we are glad you are trying again, Lisa, and we will hope for a result that is helpful.

    We want to supportive to you @Pink

    plus it is supportive for us to hear other REAL stories, so we know we are not the only ones who have been mistreated, by those we thought might help us.
    SO , again, thank you for telling us, Pink.

    How many times, and how hard it is, to repeatedly do , what the poor girl in that picture is faced with doing.
    And why are we even put in this position? I do not comprehend it, and I do not want excuses for it. I am tired of excusing being treated poorly by others, when we are ill and only asking for their expertise, their info , or some help.

    Thanks for that picture, @Lisa108
    Keep hunting, and we hope the next one, that you and any of us goes to, is better than that one, that Pink just went to. It wouldn't take much effort on their part, to do better than that!
     
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  10. Pink

    Pink Senior Member

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    I agree 1000% shoshana. It's inexcusable and not even legal. How do these Drs have family members w no trainibg, taking medical history, running medical tests?!
    Completely rediculous. I'm sorry you have had these experiences @Shoshana it's so wrong.

    Just to clarify, I had asked about a few diff dysautonomia Drs, this was Not Dr systrom in Boston. I don't want to ruin anyone's reputation. I am too sick to travel to see Dr systrom, although I was told he is very kind.
     
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  11. Shoshana

    Shoshana Northern USA

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    In my opinion, we should NOT have to travel, a few States away,
    or farther, in order to see a decent doctor.
    Some of us cannot do that, for various reasons.
    And if there are local ones, we should be able to expect basic proficiency and respectfulness, from them.
     
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  12. Pink

    Pink Senior Member

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    Yes, shoshana.
    There were ppl lying on chairs for hours ! Waiting! Sick ppl. This isn't disney where ppl are healthy and excited and ok to wait for rides. We are sick, desperate, in need of answers and proper medical care by licensed professionals.
    If I wanted to get medicine from a book, I didn't need to spend 8 hours to do it.
     
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  13. Shoshana

    Shoshana Northern USA

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    That was so well worded, @Pink
     
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  14. alkt

    alkt Senior Member

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    but the poor doctor you saw would not of made any money iff you had stayed at home and read a book.
     
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  15. Pink

    Pink Senior Member

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    :rofl:
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    @Pink I am so sorry you had to go through this nightmare. The dysautonomia specialist that I saw in 2016 must be his twin brother. It was the worst experience I’ve ever had w/a doctor and am honestly still a bit traumatized by it over two yrs later. Don’t give him that power (although I know it is hard).
     
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  17. Pink

    Pink Senior Member

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    I'm so sorry @Gingergrrl , that is awful, gentle hugs!
    It's so wrong and I get your feeling traumatized. We are so sick, vulnerable and desperate for help but instead get treated this way.
    He is the 2nd Dr to treat me like this.
     
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  18. Shoshana

    Shoshana Northern USA

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    :D

    He has a system rigged, so he gets you to the appointment, overbooks people, and tells them all to buy his book.
    SO he gets money from both. :lol:

    It is good to laugh, even though this is serious. :jaw-drop::woot:

    @Pink might ruin his system, since she has let us know, not to go to doctors who write books ! ;)
     
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  19. Shoshana

    Shoshana Northern USA

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    I have had 2 additional thoughts about this, .....
    one was that you did decide to read a book, but not the one that he had recommended, @Pink ;)

    Instead, you chose to read Mrs. Piggle Wiggle. Fine choice! :thumbsup::D
    More uplifting and positive. :)

    Also, I recalled years ago, having been sent to a doctor with a big reputation, who had been on radio shows and had written a series of books , and after my visit to his office, he wrote an absolutely false report about me, with such things as "she showed no desire to get well" after I had cried and literally begged for ANY possible way that he thought I might get well. And other false things he wrote, such as that I had no difficulty opening his office doors, which I had suffered and struggled to do, etc..... while no one had offered any assistance, and he had apparently looked on, .....while wearing blinders, and writing in his book. :mad:

    SO....I guess, it is a red flag, that if a doctor is very interested in selling books, particularly about difficult illnesses without yet enough research or effective, available treatments, that their hearts might NOT be in the right place, to give us any help, or even any polite respectfulness.

    I think I might look for a copy of Mrs Piggle Wiggle, for myself.
     
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  20. Sushi

    Sushi Moderation Resource Albuquerque

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    I know you don't want to wreck his reputation but consider letting us know who he is so we can avoid him. Autonomic specialists are rare and most have to jump through a lot of hoops to see one--so we really need to see one who is good and thoughtful of patients.
     
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