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Question About Follow Up Care


goawaypots!

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Who do you typically follow up with for your care? I was diagnosed by a POTS specialist a few years ago but I get the impression they prefer local follow up after the diagnosis is made. I have tried to continue care with local physicians but I have not been able to find physicians that are familiar with POTS or who are comfortable treating POTS. My heart rate continues to be elevated even after being on multiple medications for the last few years. Essentially I feel that I am left without anyone to manage my care which is very frustrating. I feel like my outcomes would be better if I truly had someone managing this condition on an ongoing basis. Any advice or recommendations that others have found helpful for follow up care would be greatly appreciated :)

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I have a cardio and a neuro that are both familiar with POTS. My PCP also sees me every three months so he can keep his notes up to date for insurance and also in case of emergency. I also have MCAD so I see an immunologist on an ongoing basis for that. I was recently also dx with EDS, so I will apparently be seeing my new geneticist every few months. There is a doctor's list that is organized by country and state (US) that you can access from the main Dinet homepage.

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