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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

Ocular Migraines

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
A myMPNteam Member

I started getting ocular migraines in 2017. I went to the eye doctor and two neurologists. No one thought of testing my blood but did all kinds of other tests. I was diagnosed with PV in 2020 and my… read more

posted November 8

What Aspect Of Your MPNs Worries You The Most?

What Aspect Of Your MPNs Worries You The Most?

posted August 12
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 (edited)

Does Anyone Have Ringing In Their Ears Intermittently With PV?

Does Anyone Have Ringing In Their Ears Intermittently With PV?

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
A myMPNteam Member

That's interesting!

posted November 5

What Advice Do You Have For Others About Managing Fatigue?

What Advice Do You Have For Others About Managing Fatigue?

posted June 3
A myMPNteam Member

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

posted August 14

How Does MPN Impact You Emotionally?

How Does MPN Impact You Emotionally?

posted June 24
A myMPNteam Member

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

posted August 1

How Do You Handle Unsolicited Advice From Family Or Friends?

How Do You Handle Unsolicited Advice From Family Or Friends?

posted September 10
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

What Is Your Favorite Hobby?

What Is Your Favorite Hobby?

posted September 2
A myMPNteam Member

What is your heaviest pull?

posted October 19

What’s One Thing You Wish People Who Aren't Living With MPNs Could Understand?

What’s One Thing You Wish People Who Aren't Living With MPNs Could Understand?

posted September 16
A myMPNteam Member

I have brain fog and cannot think of a very word 5 seconds after I initially thought of it. It’s gone. So embarrassing.

posted 5 days ago

Which Supplements Or Vitamins Do You Take, And Why?

Which Supplements Or Vitamins Do You Take, And Why?

Have you noticed any differences when taking them or missing a dose?

posted August 22
A myMPNteam Member

Somehow all my emails got dumped into spam. I am having a difficult time getting all of them back and un-spammed.I haven't been on in a while because I seem to not be getting any posts from this… read more

posted October 6
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