← Return to Polycythemia Vera: Just been diagnosed
DiscussionPolycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: Apr 13 1:55pm | Replies (427)Comment receiving replies
Replies to "Good morning! I wish we could have a cup of coffee together. Your post sounds familiar..."
I was also diagnosed two years ago at 47. After my daughter was born, I started experiencing headaches with aura's. Always the same. I'd wake up with a faint "tension headache" that lingered. By early afternoon, I would have some type of vision disturbance then I get tingling in my fingers, it would travel up to my face. By the time it hit my lips all the symptoms would disappear. I ended up in the ER when the headaches changed and were so bad that I was throwing up. The ER doctor picked up on my elevated RBC. It took about 4 months but finally was approved for Jak 2 test, which came back positive. So many of my symptoms were passed off as perimenopause. I'm doing well...need to exercise more. I get phlebotomies about every 9 months and take 162mg of aspirin a day. I hear so many on medication, wondering what the determination is for this?!
Thank you for the reply! I am in Cypress, TX if you’re near there. 😉
I have started a list of odd symptoms as well as generalized questions I plan on asking.
My insurance is UHC Kelsey Seybold, so as far as I know, I don’t have the option to go to places like MD Anderson or Mayo, but I’m definitely going to investigate. I don’t think there’s an MPN specialist with Kelsey. 😥