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Posted

Has anyone had a doctor who doesn't want to give any diagnosis at all? I just had a visit with one who "doesn't care what we call it," and just wants to try things to treat symptoms.

He is sending me to an autonomic specialist, but he's the second cardiologist who doesn't even want to speculate about what the problem might be (to me, at least). It might, might not, or might partially be my heart rate, shouldn't be my blood pressure but might be my blood pressure, might not even be a cardiac issue, might partly be a cardiac issue... he said we could call it POTS because "POTS is popular right now," whatever that means. That being said, he prescribed Fludrocortisone--does that mean he thinks it is my blood pressure after all? The tilt table test showed my heart rate going from the 50s to over 100, which one doctor said was a lot and this doctor said wasn't a lot.

I like that he doesn't pretend to be certain, but is this common? I don't mean to complain, but I'm confused and wonder if doctors often respond this way to the admittedly long list of symptoms.

I told him I would like to know the cause, what's wrong with me, how we can treat it without understanding it, etc., but is that not clear enough? How can I get a doctor to explain the reasoning behind treatment without sounding aggressive?

 

 

Posted

From my experience with mainstream medicine, most doctors in the modern healthcare system will only treat symptoms, usually with medications, and when those medications cause more problems, then more medications to treat the side effects will follow..

Functional medicine doctors will be more motivated to get to the root cause and offer you solid explanations. But finding an affordable and local one of those can be a real challenge. 

My current cardiologist couldn't pronounce the word dysautonomia, and many months ago when I said I thought carbs were the problem they just told me "I love carbs, I'll take all your carbs" ha-ha

So I took what I could from the tests that were done, went for a follow-up where I probably taught them more than they could've advised me on, and I probably won't be bothering to go back there again. Thanks to my functional drs and the good people in these forums, I understand most of what my body's deal is, and can manage it decently enough without any prescriptions at all. 

Aside from being able to say what your condition most likely is, the diagnoses are important for stuff like disability claims, so if that's what you need or if that's something in the realm of possibility for you in the future, then you'll definitely want to find a doctor who's willing to say what the issue is exactly and document it correctly so that it doesn't compromise your finances later. 

Posted

@DickinsonsMeadow Sounds like a typical provider that does not understand dysautonomia and is scared of it. This is quite common, since the different causes and subtypes for POTS make treatment very difficult. Most docs want a diagnosis that has a standard protocol of treatments they can prescribe - POTS does not. On the upside you get a referral  for an autonomic specialist, that is great. Be aware that most of them have long waiting lists and may require for you to travel out of state. 

Posted

@bumpkin and @Pistol, thank you for your supportive messages. It's so nice to feel I'm not alone with this problem. I do feel uncomfortable with taking medication when doctors won't explain why they're prescribing it (and suspect they're just giving it to get rid of me). Yes, I already have disability and recognize how important a real diagnosis can be.

What is a functional doctor?

Posted

 @DickinsonsMeadowI would spin this visit into a positive one. seeing the cardiologist is referring to a autonomic specialist and tring a med is assuring. Be Honest it is not uncommon for a provider not giving a definitive diagnosis when they are not sure what the issue is. They run the risk of getting pinned down when something is out of their expertise. Good example i can give is my vascular doctor telling my leg pain is not due to a blood flow issue (which is accurate) but not wanting to get caught up in a complicated diagnostic for other issues that he know nothing about.  

Having a long laundry list of symptoms also complicates a diagnoses as many conditions have similar overlapping symptoms.

Keep at it. 

 

      

Posted

@DickinsonsMeadow I doubt you would get in with anyone sooner, April is just 6 months away. I am surprised you got it that soon! IF you get an earlier appointment with someone else I would not cancel the April appointment. 

  • 2 weeks later...

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