AllAboutPeace Posted June 12, 2012 Report Share Posted June 12, 2012 Hey everyone,This is a follow up to this post from last week when I was anticipating my TTT..http://forums.dinet....-upcoming-test/the appointment: I arrived early for the ECG and had that done right away, so I had almost an hour before my tilt. I was fully prepared to tell them that I would not accept medication (unless there was a very good reason for doing so - not just because it is what they do everytime to non-pots patients). So, the EP/cardiologist saw that I was there early and she told me that she wanted to meet with me before the tilt. I thought this was great because it would give me a chance to discuss my concerns with her. She thoroughly interviewed and examined me (a brief poor man's tilt) and told me that she was cancelling the tilt test. She said that she could clearly see that I have Pots (based on significant hr increase, extreme blood pooling and drop in blood pressure a few minutes in) and there was no point in putting me through the experience of being on the tilt for 45 mins!! She said that it would just make me feel miserable and it wouldn't change treatment options. The test was simply to confirm the diagnosis. Does this happen?? I was really surprised (pleasantly so ). She said we could do the test if I wanted to, but my only concern was that I have the diagnosis. She said absolutely yes. I did give her a loop monitor tracing showing a 50 bpm increase in hr from lying to standing that I recorded last week - so that may have also played a part in her decision (???)Otherwise, the appt was great. She knows alot about Pots, even though she has minimal practical experience. She only sees patients with symptoms similar to mine about once/year but she has never seen blood pooling, so she was quite taken back by that and how extreme it was with under five minutes of standing.She wants a sleep study done; prescribed more salt (although I should adjust accordingly); discussed pros/cons of meds to try; has a plan in place for rhythm issues I've had. She knew the right questions to ask and everything I said seemed to make sense to her. She also said that she realizes how difficult it must be to live with something like this when people don't know anything about it and that can lead to misunderstandings/assumptions. She said "it's not like you can walk down the street and find someone else with Pots to talk to". I really felt like jumping up and hugging her She is not in my area, but she did say that she would be happy to see me as a regular patient if I wanted to do the traveling. She is going to call to speak with my internist to find out if he is comfortable with taking this on and doing all of the follow up necessary. Either way, I will see her again in 6 mos.So a doc who is competent, confident (without ego issues) and understanding...maybe I should see if she is open to cloning Quote Link to comment Share on other sites More sharing options...
brethor9 Posted June 12, 2012 Report Share Posted June 12, 2012 yay peace!!! I am so happy it went great for you!! Its such a breakthrough for us when we finally get that Dr who gets how horrible this illness is.....and very nice that she did not make you suffer with the TTT......the blood pooling is kinda the clincher.....normal people dont have their legs mottle and turn blue ha, ha......big hugs!!!Bren Quote Link to comment Share on other sites More sharing options...
Chaos Posted June 13, 2012 Report Share Posted June 13, 2012 REALLY happy for you to have had such a good appt. That's super news. I think finding a good doc who is willing to work and learn with you, even if they aren't super knowledgeable about POTS, is one of the biggest hurdles in this whole process. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted June 13, 2012 Report Share Posted June 13, 2012 What a wonderful affirmation So happy for you, that you were able to get a diagnosis and treatment, NOT that you have POTS But you already knew that, anyway, and you have plenty who understand right here...Hugs Quote Link to comment Share on other sites More sharing options...
corina Posted June 13, 2012 Report Share Posted June 13, 2012 Congrats on a great doctors appointment All about Peace!!!!! Quote Link to comment Share on other sites More sharing options...
yogini Posted June 14, 2012 Report Share Posted June 14, 2012 Sounds like a dream appointment and a fabulous doctor. Good for you! Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted June 14, 2012 Author Report Share Posted June 14, 2012 Thanks so much for sharing my excitement about this It is my wish that everyone should have doctor experiences like this. You are all so amazing to share of yourselves through your stories, information, reassurance and support !!! ...I actually don't like to think about how I'd be dealing with all of this without this group... I hope you all have better days ahead Quote Link to comment Share on other sites More sharing options...
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