I am + JAK2 and just had a biopsy and they still don't know for certain that I have ET but my blood work is normal except my platlets are high in the 580s. I had a stroke last year and I'm only 49 the main symptom was numbness and tingling in my hands and after the stroke burning sensation in my feet. Nobody was listening to me until I pushed for further testing and was positive. They have started me on hydrea and no bad side effects. Just hope it brings my platlets down so I don't have another stroke.

@susanellis@I do know what you mean about connecting with others who have the same thing you do. It is not easily understood. Most know I have Thrombocythemia but since I have had some complications and changes, when they found out I am actually on chemo and it is cancer, they are shocked. I have had very little if any side effects from the Hydrea for 3 1/2 years. I am thankful. Thanks for the best wishes. I do have lung problems and other things but we are trying to figure out what is what and if the ET has changed and treatment needs to changed. Sometimes it is hard to sort it all out, especially for doctors who do not specialize in these conditions. I should have the results from the bone marrow biopsy which I had this past Tuesday in 2- 2 1/2 weeks. Maybe this will provide some answers for my newest problems.