yummycarrots

Dr. Hohler appears to be a specialist, and I'm pretty happy with my current specialist. I'm on the hunt for a new primary care physician who might have some sensitivity to autonomic dysfunction.

My beloved Boston PCP is leaving the area, so I'm also on the hunt for a new one who I could avoid the start-from-scratch POTS explanations with! I was even looking into concierge doctors because they sounded like a possible solution for our chronic issues, but then I got sticker shock.

I participated in this study in September. I really enjoy the research staff at this location, so it was as fun as multiple TTT with research drugs can be! I have not heard anything about results, nor did I realize I should. Maybe a quick email is in order for me... Good luck!

The funny this is that they had my TTT results, which show a clear indication of POTS. I just thought it was so bizarre the way the conversation ran "you are young and healthy and you'll be fine" when the Doc had called me in due to terrible TTT results. Argh. I am feeling better about the situation now; I do have a wonderful PCP who has been in my corner from day 1 and has been learning about POTS along with me. Got to count my blessings!

After two months of ongoing symptoms (OI, weak legs, nausea, fatigue) following a big fainting incident, I was finally able to see one of the few POTS specialists in my area. I felt very much blamed for my symptoms-- there was a lot of clucking from the residential fellow that I obviously wasn't getting enough salt (though I've been drinking 3 liters of specialty hydration drink a day). I don't know how much salt is "enough" for me as a POTSy, that's why I was there! I was told many times that I shouldn't worry about my POTS as I was both "young and healthy". This despite me having a daily log of my bp/heart rates and careful details of times I'm feeling bad. I almost wish I were more symptomatic today so that my illness couldn't be dismissed out of hand. The only ray of hope I have is that I was invited to join a study on classic POTS. Hopefully that will allow me a little more insight over what is going on. Self-education seems to be the only good choice, here. (Both the fellow and Doc were very dismissive to learn I read online forums-- too bad, as I've found DINET to be so helpful and comforting!) I know this grouchy feeling will pass eventually but right now I'm seething in it!