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I have ET and often experience fatigue, together with shortness of breath, chest and back discomfort. Does anyone have the same symptoms together with fatigue? I think it is heart-related. Any experience? Thanks!
Dear Glenn,
As Janet6 also pointed out, this is a perfect place for us to vent and to exchange information, as we need to advocate for ourselves in health care and that is a heavy task on us. So it… read more
Has anyone seen any interesting definitions of what causes MPN-related fatigue? I would like to learn more about it, not just hear experts say that it exists without saying anything about why. 😇
Hi, Erik. Fatigue has been my number one symptom. I push myself to stay active meaning keeping my behind off the lounge chair. I try to eat healthy. I take a cannabis nighttime edible candy (it is… read more
I have PV JAK 2 positive. My numbers have not gotten too high. I get pins and needles itching and and I’m tired. At work I have issues with instant recall of new laws and procedures.
Thank you Tta, this list of symptoms really helps.
Hello all, let's starts by saying how grateful I am for this group. I enjoy knowing I can go here and ask questions with overwhelming and writing my own family. You all are my MPN family.🥰 So I am 47 and I am a teacher, and the teachers Union President and the head of the World language department and a mom of 2 and I'm getting older. So everyone understands that by itself is stressful. My question is, how do I know if what I'm experiencing is a new symptom or just life, I'm guessing I go with… read more
Dead Janice,
Type A personality that you describe (energetic, high-functioning people) is a myth that does not hold up in scientific research. It was a myth used in the past to blame illness on the… read more
I have been diagnosed with ET 4 months ago, my platelets are at 900.000, I have what I'm guessing is brain fog. Anyone every have it? Is it due to being under stress? This weekend, Easter, I forgot single things, a lot!!! I'm a little stressed. Is it just stress and my ET? Does this new symptom mean my platelets are increasing? Is this what brain fog is? Worrying a little bit if simple things I forget.
If that is an option, take it. You can get support for cognitive dysfunction and that makes life easier.
Hi All,
I am a 62 y/o law student. Over the last nine months or so, ever since my polycythemia diagnosis, I have noticed trouble recognizing, remembering, and naming other law students on my campus. These are people I feel I should know. I wonder whether my blood-sludge is decreasing oxygen transport to my brain. I worry that this problem will get worse and affect my capacity for critical analytical thinking.
Online reading has not indicated polycythemia as a reason for such memory trouble… read more
Thank you, Tatiana. Very helpful information! It's good to know I am not alone here. I will follow your research links.
I've had many injuries throughout my life and have many aches and pains due to past injuries from playing sports, working or whatever. How the heck do I know if pain is from ET or what.
Tatiana
Your comments resonate with me. After work ups by cardiologist, pulmonologist, various imaging for my heart and lungs, no one can explain my shortness of breath, so I owe it up to the… read more
Many of us myself included have said we noticed changes in our bodies and self and symptoms long before we were actually diagnosed.
This bothers me bc I want and need to know, as do we all.
It’s wrong to go by the date we were diagnosed.
Anyone? Thoughts?🤔
Depending on the type of mutation you have, you can sometimes distinguish between inherited and spontaneous, as well as using VAF % between different testings (it is good to repeat the genetic testing… read more
Dear Mark,
It seems like you have familial ET, given that you mentioned your mother was also diagnosed with ET. And you seem to have two somatic mutations
I remembered about this study and maybe it… read more
🌟Anyone familiar with this
Says it’s a revolutionary specialized treatment for chronic infections, cancer, blood disorders, vitality, longevity, etc.
Apparently, many ppl do this worldwide for multiple reasons.
Reports say no known reported side effects and safe for all ages.
🌟I’m quoted it’s about $8,000 total, told the stem cells last for your life and they’re from umbilical cord blood with NO DNA from healthy babies and mothers
Said they’re tested to be safe and thankfully non- Covid… read more
Tatiana, I was only sharing my single person experience. I'll add, I was quite sick when I had Covid.
The trial for immunity measured 52 different 'proteins', antibodies related to sars covib2..And… read more
