Testing Norepinephrine and Catecholamine levels

[Pistol]

2 hours ago, MikeO said:

My vascular team and faint team and PCP now reaches out to my Cardiologist  before recommending changes to most of my meds. Life has been much better!   

This is the case with me as well. You have to appoint ONE doc to be the "CEO", and whatever any doc does you tell them they have to run it by your CEO first. Whether this is a cardiologist or PCP or autonomic specialist - YOU appoint the one you trust the most. 

[MikeO]

1 hour ago, Pistol said:

This is the case with me as well. You have to appoint ONE doc to be the "CEO", and whatever any doc does you tell them they have to run it by your CEO first. Whether this is a cardiologist or PCP or autonomic specialist - YOU appoint the one you trust the most. 

Big hug! I know you get it.

[edriscoll]

@DysautonmiaMatt It is sad and @Pistol is right about having a doctor as a point person.  And it is also true that a PCP is supposed to be the doctor who oversees all and works holistically on your healthcare.  However, even the best PCP is limited if the specialist either don't/won't recognize the PCP's role or is just bad at coordination and cooperation.  I've found that as a patient I insist on my PCP being in the loop.  I have all of my perscriptions going through her and I make sure to always remind the specialist that I want the notes sent to my PCP.  They always say "yes, that's standard protocol" and maybe it is, but it seems to work much more smoothly with the reminders.  I also have fired doctors from my care who were too arrogant to be a part of a team for my healthcare.  It's not easy to do especially when we are feeling poorly, but I find that it all works best when I advocate for the way I want my care approached. 

Sadly though Matt is absolutely right, the medical system is not setup well to deal with complex conditions.  Dysautonomia is complex and multilayered enough but when you consider that the majority of patients have dysautonomia as a secondary condition to things like EDS, MS, Lupus, CFS, etc  it makes the care and the coordination very difficult.  All the more reason though for a PCP to follow all of it for us.   

[MikeO]

I do agree with @edriscollthat a PCP should be the point of care but with that said what works for one is not always right for another. I do like my PCP he understands me and has been good with me. He is aware of the issues that fall under the blanket term "Dysautonomia" but is the first one to admit he is not trained to deal with it.

My care team does communicate well with each other and has the ability to see all my records despite the health care org thanks to all of them using the "EPIC" software.

I do lean on my PCP for the usual health concerns (pinched nerve he will send in for some PT time etc...) but when it comes to meds and he agrees UW Madison is the best in the state to manage them. He also said he would have not even considered or let alone heard of some of the meds that is working for me.

My Cardiologist and Faint team has been awesome as well. If they feel i and not getting the care that i need they will step in and get me what i need.

I also agree one with chronic problems need to take a more active roll in your health care.