DYSAUTONOMIA-THE SUCKY MONSTER

Hello World. This is my first attempt at blogging. It is mostly for selfish reasons, as I have recently been diagnosed with a devastating condition that has changed my life in every way. Six months ago I could walk, drive, work, cook, clean, take care of my family. I knew I was sick, but none of the physicians I went to could diagnose me. They just said I was not getting enough oxygen to my brain but they did not know why. I had been doing this for two years and getting sicker and sicker. I asked UAB for a referral to a group of neurosurgeons and cardiologists in St Paul, MN. I spent 3 weeks in September having every test known run. The last physician I saw was an Electro-physio Cardiologist. He reviewed all my test results, asked me questions that went all the way back to my childhood, and many questions about my symptoms. Then he told me I had Neurocardiogenic Dysautonomia:
'Dysautonomia is any disease or malfunction of the autonomic nervous system. This includes postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, multiple system atrophy (Shy-Drager syndrome), Autonomic Instability and a number of lesser-known disorders.In some cases, dysautonomia results in a reduction in the ability of the heart and circulatory system to compensate for changes in posture, causing dizziness or syncope (fainting) when one, eg, stands suddenly. In other cases, the heart may race (tachycardia) for no apparent reason (known as Inappropriate sinus tachycardia), or the kidneys may fail to properly retain water (diabetes insipidus).The effects of dysautonomia may be minor, only limiting the patient's activities slightly, or they may be totally disabling, leaving the patient bedridden.'

According to my physician, he does not think I will get much worse. He believes I will be able to walk a few feet at some point. He thinks my energy level will improve. However, he says for me not to expect to see any changes for at least 6 months. Now, that is just unacceptable.