Hi nohrt4me,
Thank you for posting. White Coat Syndrome just means I get really high BP (in my case systolic but fine diastolic) when I see doctors, but have completely normal BP at home. I take my BP at home morning and evening to make sure it is fine and it has been. I have an appointment with a new primary doctor on 3/14 who I am assured will not cancel on me like my first one with Kaiser did four times, even before I had aberrant lab work! I can ask my O/H what you suggested. I did not know that early on MPN researchers looked at all CALR mutation patients as PMF. Honestly, I do not think she has experience treating either ET or PMF and that she did not appreciate me asking any questions. If I truly have PMF, her Hydrea regimen would not be appropriate so I am not in any rush to take it. I really did not know how hard it is for docs to tell if one has ET or PMF. Is it really that difficult?
Yes, my O/H doesn’t think my swollen non painful right ring finger has anything to do with my labs. I have an appointment with her med school classmate on March 26 who she referred me to because he is a great hand specialist she said. It might actually be better for me to be referred to someone she doesn’t know to get a more unbiased opinion just on my finger in hindsight. I have already been to an outside of Kaiser hand surgeon who did a MRI and said she did not know what I have and would just do surgery to figure it out then which sounded really strange to me. So my experience with docs really has not been helpful at all. I really would like to address my finger first and will I make sure to bring that up to my new primary doc when I go in two weeks.