Hi, Mike, I am sorry to hear about your symptoms. I am not too familiar with some of them, but I am all too familiar with "brilliant" doctors brushing me off as if nothing is wrong. It turns out I am really sick and getting progressively worse. My diagnosis is I have a PFO (hole in my heart) with an ASA (floppy/flabby wall between left and right side of heart) that has caused some serious complications. I invite you to read the threads on "PFO closure with transcatherer." We have a great group of people who support each other and you may learn something from our experiences.
My strong recommendation to you is that you seek a second opinion from another cardiologist. My first cardiologist brushed off my symptoms as if they were nothing. I insisted on having tests done and this is when some of the findings of my condition were made. And even then, he was playing off the results of the TEE (transesophageal echocardiogram) as if they weren't that significant! I immediately switched cardiologists. The one I have now is also an interventional cardiologist and the first time I went to see him, he literally spent about 30 minutes with me analyzing my tests result and actually thinking things through with me to help me make the right decision. My second neurologist (my first is considered a "brilliant" neurologist in his field but gave me a diagnosis of "migraine with aura" which later tests showed was actually a minor stroke) also saw my tests results and said I should have the PFO closed as soon as possible. And my pulmonologist? I saw him outside the patient room and he actually spent about a full 10 minutes just reading my results so he could come in and talk to me about them! Wait, isn't this what doctors are supposed to do? I felt that my first cardiologist barely glanced at the test and brushed me off. My pulmonologist said that he strongly supported my decision to have my PFO closed because it was causing extra burden on the right side of my heart, my valves had mild to moderate regurgitationas a result and I have "borderline pulmonary hypertension." I was coughing very badly for a while and had 3 upper respiratory infections in the past 6 months (I am normally very healthy and hardly ever get sick), so I knew something was going on with my lungs. Thankfully, my lungs have not yet been affected, but they would have if I had waited longer or done "nothing" which is what my first cardiologist and neurologist pretty much suggested. Thankfully, my 3 new doctors are awesome. I am having the PFO closure procedure done this Friday, Oct. 24th.
My strong feeling is that you have something physically wrong with you and I sense that this is also the way you feel. Go with your instincts. They are usually right. I know mine were. And I did not let any super doctors tell me nothing was wrong with me when I could FEEL myself physically deteriorating.
Please keep us posted. I wish you the best of luck in your quest. It is a difficult journey, trying to figure out what is wrong with you, but we are here to provide words of support and encouragement whenever you need them.
Greenhope