Originally Posted by ~♥~ADDYSON~♥~

Hi Krissie. I'm sorry, I didn't totally understand your post. Did you mean 18 months or 18 years? I know a lot of people with these conditions sometimes go many, many years without a diagnosis. I was diagnosed last year after having pericarditis in July. I went to a cardiologist after the acute phase of the pericarditis. I was continuing to have symptoms of rapid heart rate, low blood pressure, chest pain and difficulty breathing upon standing. She diagnosed me almost immediately. She then sent me for a TTT and it was also positive.

But after learning about more of the symptoms of this horrible illness, I honestly believe I have had it for many years, I just didn't know what it was. My doctors also believe the pericarditis exacerbated the illness and made me a lot worse. I now pass out very often. I have passed out over 30 times since September of last year. Since my doctors here only know a little about the illness and even less about how to treat it, I was referred to Vanderbilt University Medical Center this past March for further testing and evaluation. Dr. Raj was the doctor who saw me there. He says that syncope in POTS patients is somewhat abnormal but not unheard of. While I was there, I had a test to check for low blood volume and for low red blood cells. Both of them came back positive....meaning that my blood volume and red blood cell count is moderately to severely low. So now he is working with my local PCP and cardiologist to find a plan to help get some of these things back close to where they should be.

It has been a long road so far and I am far from been well but I am blessed to have a team of doctors who are working together to help me.

If you don't mind, would you share what your experience has been??

Great to me you!