MPN Questions

MPN Patient Q&A: What Questions Should I Ask If I Suspect I Have an MPN?

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MPN Patient Q&A: What Questions Should I Ask If I Suspect I Have an MPN? from Patient Empowerment Network on Vimeo.

For patients who suspect they have a myeloproliferative neoplasm (MPN), what questions should they ask? Watch as MPN patient Nona shares her advice for approaching questions with your doctor, and Dr. Nicole Rochester explains how to empower yourself to shift doctor-patient communication.

This program provides one patient’s perspective. Please talk to your own doctor to make healthcare decisions that are right for you. 

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 Dr. Nicole Rochester:

All right, we also have a question from Julie. Julie says, “I was given the run-around early on in my journey and wasted valuable time.” And she wants to know, “What are some questions or actions to take at the outset when ruling out MPNs?”

Nona Baker:

That’s a difficult question, because I think everybody is different and every health service is different. I think if you’re in an area where the clinicians don’t necessarily know too much about MPNs, that can be problematic. We’re a small country here, and we have access to some really good hospitals that specialize in MPNs. I think, again, it’s going back with your piece of paper saying, “Can we rule out that I’ve got an MPN and I’ve read about MPNs, I have the symptoms,” whether it’s fatigue or whether it’s itch for PV or whatever the symptoms are, “and I’ve seen that that can be a symptom of an MPN.” And again, take a piece of paper, and say, “Can we rule that out?” You know, I think that’s empowering.

Dr. Nicole Rochester:

I agree. Nona and I think when counseling patients who have had misdiagnosis or a long road to accurate diagnoses, what you just said is key. And a lot of times it’s a matter of opening up the minds of your physicians and your healthcare team, and like you said, if they’re not familiar with MPNs, then they may go down a path of giving you a different diagnosis. But if you’ve done a little research or if you have some concerns, just saying, “Could it be this…I know that you think I have this condition, but based on what I’ve read, based on what I’ve learned, could it be an MPN?” And a lot of times just that suggestion is enough to kind of shift the conversation, so I think that’s wonderful advice.