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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
Solidarity 🌷
Exhaustion is a symptom of MPNs, and so is body pain. While stress might accentuate them, when one has an MPN, it is far more likely they are there due to the MPN. There are some good… 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.
🌟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
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.
What has least side effects?
I heard Pegasus Interferon but Googled that and it has some bad side effects also.
What about Jakifi? The others?
I’m stressed out as I already have big anxiety about taking meds and Rx.
But I (like all of us) will have to take something at some point.
I’m reading those who wait to treat with Rx generally end up with worsened progressed condition(s).
Seems it’s a game of Russian Rouette whether you take it or not.😰
We are in control to choose our poison. I prefer to do my research, shop around, identify experts with whom I agree, and give it a try
You are the boss
Thank you again
Solidarity 🌷
Exhaustion is a symptom of MPNs, and so is body pain.
"Prominent symptoms include fatigue (92.7%), early satiety (61.9%), abdominal pain (45.9%), abdominal discomfort (53.2%)… read more
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
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
I have PV
Dear Ruth,
I am lucky to have access to information and to be in a community of people with other types of chronic illness who share a lot on information and new research. As they share with me, I… read more
