Will it be too late??

As I posted on my earlier posts, my oncologist that I was referred to said he suspected MPN. The few tests he's done came back negative. Do you absolutely need a bone marrow biopsy to rule this out?? My symptoms continue and I'll go for another CBC on Monday to see where my numbers are at. Both red & white counts are up, but one test showed them normal and then 20 days later they were raised again. Is this a common thing in this disease, or are they ALWAYS raised? After being on this site, I have found an oncologist here in Chicago that specializes in this disease. He's at Northwestern, and of course I can't think of his name right now. He's been on a few video's on here, being interviewed etc. The only thing is. .. I can't get in with him until April! Will this be too late is what I'm wondering?? Also, something new... and wondering if this could be part of the disease is higher blood pressure, but more so is my pulse. It is constantly racing, even at rest. I get an ultrasound of my heart next week. I have never had Hugh blood pressure, I've always ran pretty low actually. I've given up on my oncologist as I have left a message with the nurse over a week ago and I STILL have not heard back from her. I looked at his reviews as well and he's rated 1 star out of 5. Explains the care ,or I shall say the care I am not getting from him. Please help answer my questions with symptoms you guys have had, how long it took to be diagnosed and did you need a biopsy to be diagnosed. Also, is my appointment that's scheduled too far out? Thank you all for your help!!!

3 Replies

  • I found my new Dr at Northwestern, and the service there to be fantastic. From the time I first contacted them to the first appointment was a 2 1/2 month wait.

    I would recommend that you sign up for My Chart at mychart.nm.org/mychart/defa...

    This will show your appointment, and you can email questions to their office via this site. I found that when posting a question, the Doctor responded quickly. I am very happy to have found the Hematology group at Northwestern. I am new to this having been diagnosed in October so their support has been fantastic.

    It's a scary road to be on when you don't have answers or a treatment plan.

    Good Luck to you.


  • Hi JenRen, you might find this article in our June 2014 newsletter about testing for MPNs mpdvoice.org.uk/wp-content/... Maz

  • Thank you so much Maz. I was tested for Jak2 and came back negative, however I was not tested for that other gene. I'm so happy I found MPD voice. You all are so helpful. Thank you!

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