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How to find a PCP who understands Dysautonomia (Boston anyone?)


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Hello, 

I was hoping to get some suggestions. After discussing my recent exacerbation of POTS and autonomic symptoms (orthostatic intolerance, shaking spells, pre-syncope, fatigue, weakness, shortness of breath) after having Covid with my primary care doc, she has once again dismissed my difficulties as anxiety and tried to push me into mental health treatment and starting an SSRI (which I tried before at her suggestion but that put me in the ER for crazy HR and flashes of burning sensations all over my body, I think she forgot. She doesn’t believe my medication sensitivity either). I’m fed up. Her specialty is dermatology by the way. I tried to explain that my issues are neurologic and not psychiatric. Has anyone else been able to find a PCP that believes in autonomic disorders? How did you find them? I live on Boston’s North Shore and am so done with this one. 

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I am currently searching for a PCP in R.I., so not too far away. I’m asking my specialists if they know anyone they’d recommend. Please share if you find someone!

I think my PCP believes in it, but he is patronizing and just wants me to get used to everything. He also blames ridiculous stuff on my meds when it’s not possible (as in I was losing weight well before I started adderall, and now I take 2.5mg once weekly when I need it, down from daily, partly to make him shut up and partly because it's expensive. Come on!!!). 

Good luck! I know how frustrating it is.

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@Hippopotsamus and @RecipeForDisaster --- I found through my own experience that there is no way around doctor shopping. Although I am lucky to have had a phenomenal PCP right from the start  I could not find cardiologists or neurologists that understood POTS. I kissed a lot of frogs before I found my prince in the way of specialist, but I don't know where I would be today without the endless support and patience of my PCP.  What is absolutely necessary ( besides a basic knowledge of dysautonomia in general or at least an open mind towards it ) are the following qualities: 

- listening. If the doc does not listen and take you serious it's an automatic out. 

- willingness to work with you in trying a treatment. If he/she tells you to take a beta blocker and expects you to be done it's not worth your time. Many docs believe that if they treat ONE symptom the rest should improve as well and then label you as difficult or hypochondriac when you don't react as they expected.  

- understanding that as PCP he/she is your absolute go-to person. A PCP should not simply refer you to a specialist and then expect that doctor to take over. Dysautonomia is a multi-faceted illness that requires a TEAM of specialists who work together in finding the right treatment for ALL of your symptoms, and the PCP is the coordinator of all of them. 

- understanding that dysautonomia is a chronic illness and MAY ( not necessarily will ) lead to disability. The PCP then is responsible for helping you in that process. 

What I have found to be a helpful tool in knowing what to expect from your doctor is the book " The Dysautonomia Project ". It is a book written for both patients and physicians and is a guideline for both in what to expect and how to approach POTS treatment. I read and shared it with my PCP and Cardiologist and both found it immensely helpful. You can get it at the website with the same name or at amazon. 

To both of you I encourage you to not settle for anyone that does not make you feel relieved after the visit. For most dysautonomia sufferers it is like a huge load taken off when we hit the jack pot and find the right PCP. Best of Luck!!!!!

 

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16 hours ago, Hippopotsamus said:

 Has anyone else been able to find a PCP that believes in autonomic disorders? How did you find them?

I have had better experience with nurse practitioners then with M D’s. Of course it depends on the person but I have found nurse practitioners to be more open minded and willing to listen and look at research.

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12 hours ago, Pistol said:

@Hippopotsamus and @RecipeForDisaster --- I found through my own experience that there is no way around doctor shopping. Although I am lucky to have had a phenomenal PCP right from the start  I could not find cardiologists or neurologists that understood POTS. I kissed a lot of frogs before I found my prince in the way of specialist, but I don't know where I would be today without the endless support and patience of my PCP.  What is absolutely necessary ( besides a basic knowledge of dysautonomia in general or at least an open mind towards it ) are the following qualities: 

- listening. If the doc does not listen and take you serious it's an automatic out. 

- willingness to work with you in trying a treatment. If he/she tells you to take a beta blocker and expects you to be done it's not worth your time. Many docs believe that if they treat ONE symptom the rest should improve as well and then label you as difficult or hypochondriac when you don't react as they expected.  

- understanding that as PCP he/she is your absolute go-to person. A PCP should not simply refer you to a specialist and then expect that doctor to take over. Dysautonomia is a multi-faceted illness that requires a TEAM of specialists who work together in finding the right treatment for ALL of your symptoms, and the PCP is the coordinator of all of them. 

- understanding that dysautonomia is a chronic illness and MAY ( not necessarily will ) lead to disability. The PCP then is responsible for helping you in that process. 

What I have found to be a helpful tool in knowing what to expect from your doctor is the book " The Dysautonomia Project ". It is a book written for both patients and physicians and is a guideline for both in what to expect and how to approach POTS treatment. I read and shared it with my PCP and Cardiologist and both found it immensely helpful. You can get it at the website with the same name or at amazon. 

To both of you I encourage you to not settle for anyone that does not make you feel relieved after the visit. For most dysautonomia sufferers it is like a huge load taken off when we hit the jack pot and find the right PCP. Best of Luck!!!!!

 

@Pistol, your wisdom is invaluable as always. Thanks for taking the time to respond. 

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I agree with both @Pistol and @Sushi I have a neuro NP WITH 25+ years experience in dysautonomia who is simply wonderful. I also have a cardiology NP that I adore. The appointments are 45 minutes with the NP plus 15 minutes for ortho vitals. They are located at a nearby dysautonomia clinic which just happens to be 15 minutes from my house of 30 years. I had a hard time finding a PCP after my beloved one moved to urgent care.  I joined the state Facebook dysautonomia community long enough to post the question seeking a new one and found a fantastic one near by who is well versed in dys. She’s associated with the local medical college. I got off Facebook right after because I can’t stand it but in this situation it was vital. Just another idea for you to try.

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