My name is Cassandra. I'm so glad to discover a place to talk with others with ET.
I was diagnosed almost 20yrs ago with a count of over 3.3 million after suffering an ovarian cyst hemorrhage. Since then I've been on and off hydrea and agrylin. In the last 2yrs I developed a strange array of symptoms I'm not sure are related to ET like bad dermatitis, joint aches, transient fatigue…
I have seen every onc/hematologist there is in my area (6) and after all these years, my instincts are screaming that I've never gotten the level of care I should be getting. How does one go about finding a really good specialist? Does someone out there know how I can find a more thorough doc that specializes in ET?
