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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Ocular Migraines
A myMPNteam Member asked a question 💭

I’m new to the site and just received positive JAK2 mutation results - discovered via a high platelet count at my regular annual physical. I’m in my mid-60s, in excellent health other than high platelet levels (800s), and all other blood levels and markers are normal and I had no symptoms. My hematologist suspects ET, but I will meet with him next week for confirmation & a full consultation and review of treatment options. The only other remarkable issue I’ve had over the past few years are… read more

posted June 6, 2021
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A myMPNteam Member

Welcome to this site. I was diagnosed with ET 5 years ago and have been on a variety of Hydrea dosage. I have headaches and fatigue, but no ocular headaches.

posted April 21
Does Anyone Have Ringing In Their Ears Intermittently With PV?
A myMPNteam Member asked a question 💭

Diagnosed just in May 2020 with PV. All my counts, Hematcrit, WBC's & Platelets are in good range. Recently developed intermittently ringing in my ears. Anyone else have this & is there any treatment for it you've found?

posted January 15, 2021
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A myMPNteam Member

Yes, I have had and do have ringing in my ears; however, the ringing predates the diagnosis of PV. I try to ignore as much as possible.

posted April 9
Who In Your Life Best Understands How Having MPN Affects You, And How Do They Support You?
A myMPNteam Member asked a question 💭
posted June 10, 2022
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A myMPNteam Member

Mine came from Norway and Germany

posted August 8, 2022
Which Supplements Or Vitamins Do You Take?
A myMPNteam Member asked a question 💭
posted April 26
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A myMPNteam Member

I would really suggest that your husband bring that up with his doctor. There are so many drugs, and even supplements we think are harmless, that may have adverse reactions with the MPN treatment and… read more

posted May 23
Has Everyone Who's Been Diagnose With An MPN Had A Bone Marrow Biopsy Done?
A myMPNteam Member asked a question 💭

Is a baseline bone marrow biopsy standard in the diagnosing of a MPN or for monitoring it?

posted July 3, 2021
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A myMPNteam Member

Bone Marrow biopsy is the Only way to accurately diagnose PMF and the level. I am ET, but had some minimal scaring in marrow. Scarring can eventually lead to a complete inability of marrow to… read more

posted 4 days ago
What Aspect Of Your MPNs Worries You The Most?
A myMPNteam Member asked a question 💭
posted August 12, 2022
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A myMPNteam Member

Hi Linda4, cancer has many causes. As an engineer i suspect that the amount of electromagnetic radiation from an electric blanket is not particularly impressive compared to all the other sources… read more

posted November 26, 2022 (edited)
What Advice Do You Have For Others About Managing Fatigue?
A myMPNteam Member asked a question 💭
posted June 3, 2022
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A myMPNteam Member

Jw62 yes I am the same way. If not used wake up with headache, brain fog, fatigue.

posted August 14, 2022
What’s The One Thing That's Helped You Most With Fatigue?
A myMPNteam Member asked a question 💭
posted May 17
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A myMPNteam Member

I hesitate to say this but I drink one energy drink in the a.m. as it is a kick start, plus a good multiple vitamin. I try to get 7 hours of sleep per night. I walk 10000 steps per day and I try to… read more

posted 5 days ago
How Does MPN Impact You Emotionally?
A myMPNteam Member asked a question 💭
posted June 24, 2022
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A myMPNteam Member

Yes! Cute dog, Judy! What is his/her name?

posted August 1, 2022
How Do You Handle Unsolicited Advice From Family Or Friends?
A myMPNteam Member asked a question 💭
posted September 10, 2022
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A myMPNteam Member

Going on two weeks with very sore roof of the mouth. Still shook for a week. I know it was from the vaccine as the prior vaccines made me very I’ll. Doctor gave me Mary’s Magic Potion for the mouth… read more

posted October 20, 2022
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