Warning... this is a long post I had the consult with the autonomic cardiologist today, Dr. C, and had been referred to him by my regular cardio. He was amazing and I cannot recommend him high enough. If anyone in LA (or elsewhere) wants his name, send me a PM. Back in Aug, I had an exercise echocardiogram (at my regular cardio) and was never given a copy of the results but she called and told me that I had "No ischemia or blockage." Well, this turned out not to be true and Dr. C showed me the results. It had the word "Ischemia" in three places and the final sentence said that I had two episodes in my EKG which (and this is verbatim) "Constitute an ischemic response to exercise." He said this is like a tightening where enough blood is not going through. Prior to seeing him, I met with his nurse & physician assistant who took my HR & BP in multiple positions (lying, sitting, and standing.) At one point I had to use the restroom and had to walk down a very long hallway twice. I became so out of breath, I felt as if I could vomit or faint and the secretary had to hold me up and get me water and bring me back to the room. It took about 10 min before I could catch my breath to speak again. Dr. C said this was beyond the typical EBV/CFS patient that he sees and even beyond the typical POTS/dysautonomia patient and that, again verbatim b/c I take a lot of notes, "I am in the 25% of sickest patients that he has seen" and he wants to hospitalize me for tests. He said I need to have a CT scan of the heart with contrast dye and that this is the definitive test and we'd get the results back in the same day. He said exercise echos can have both false negatives and false positives (in both the echo and ekg portion) and not definitive especially for the level of shortness of breath and tachycardia that I have every single day. If the CT scan finds something bad, I would need some kind of surgery (angioplasty?) to correct it. But if that test is negative, then he can diagnose that I just have horrible POTS/dysautonomia (from CFS or God knows why?) and he would do a tilt table test, an ACTH stimulation test, and other tests in the hospital. He would also try low dose Midodrine and maybe switch beta blockers. He truly captured the essence of how much I am suffering when he saw that I was a social worker for 16 yrs in a very demanding job and now I can barely walk across the room. He said, "You are extremely disabled" and it made me cry b/c he got it and understood. Then he told me that his mother and daughter were social workers and he had endless respect for us (which also made me cry) b/c many doctors have zero respect for social workers and I knew he understood how hard I worked and what a loss it has been to lose my entire career. So, while I am terrified about going into the hospital for these tests, I am also relieved that he is going to help me. He will facilitate everything and said he understands that I take tiny micro doses of medications (and most of his dysautonomia patients do) so he knows how to handle this. I am still very worried that the hospital could accidentally give me normal doses of meds which would make me very ill. It would not be at the hospital where I used to work which is also a big plus for me. I do not understand why my own cardio did not tell me the true results of my exercise echo and feeling angry about this. I e-mailed my CFS specialist, Dr. K, to see if he can coordinate with Dr. C. The two of them are the most thorough doctors I have ever seen and if I can get this done by Sept 30th, it will be covered by my insurance which I am about to lose. Dr. C said that he will call me today or over the weekend as soon as he speaks to my regular cardio. I told him, however, that even if she has a different opinion, I want to proceed b/c I really have no quality of life in my current state. I cannot do activities with my husband & step-daughter outside the home and if he can improve my shortness of breath and tachycardia so I can breathe while walking, I will do whatever it takes and would literally spend my life savings. Has anyone had any of these tests? All of them scare me, especially the tilt table, and doing so many so close together in time span (although at least I will be in a hospital if something goes wrong.) My husband was with me at the appt and absolutely 100% felt that I should listen to this doctor and proceed with everything.