briarrose Posted June 4, 2004 Report Share Posted June 4, 2004 Sorry still half asleep so forgive me please. But I got to thinking and I wanted to put it down before it slipped away.A few months ago most people posted their POTS stories. I can't remember who took them all down but is that person or someone else willing to take on a huge project? I will definitely help, but not well enough to take it all on. After my post yesterday I got to thinking that WE POTS patients should help the doctors and researchers out. WE should compile our own lists of symptoms that WE suffer from. And WE can put down the statistical format of how many people replied and how many had what symptoms. A questionnaire that we can test on ourselves. Once we get it compiled then we can pass it out and do a group edit by adding things we remember that we've endured over the course of this horrible illness.End goal is by making our own survey and giving it back to them! That way they can see that it's a little more common and maybe a little light will click on inside to help them understand us better. I personally think this is important by helping us communicate to the medical world what's really going on. It's not just blood pressure, heart rate, brain fog, etc.I have personally told Dr. Grubb, my primary care doc, cardiologist, rheumatologist, endocrinologist, etc that I suffer from multiple symptoms at one time or another. Even Dr. Grubb has said he hasn't heard of a few of those complaints. I think he hasn't heard them because his time is so limited and we only say the immediate worst. But it would be beneficial to enlighten the medical community. Let?s give them the whole puzzle to us rather than a few pieces.Please help! It's for all of us and the future patients of dysautonomia. Quote Link to comment Share on other sites More sharing options...
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