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 found out I have hypothyroidism, I had a hysterectomy in November. It is not as bad as last year, but continues to happen. Was hoping someone can provide some guideance.
Regarding thyroid: I've been treated for Hashimoto's thyroiditis for 40 years. 100 mcg of Synthroid has kept my thyroid level normal, ever since the correct dosage was found. Also: Does… read more
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
Dear MJGee
I experienced an ocular migraine the day I suffered a mild heartache in November of 2017 which led to my diagnosis of ET Jak2+. Since, I experience about 6 a year. I also, started with… 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.
Yes, I definitely have memory issues!! I'm afraid it's from the ET itself or the HU. I feel so self-conscious when I'm talking to someone + I forget a word or 2, or even forget what I'm talking… read more
I have continuous ringing in ear and my doc says it's nothing to do with MPN. But I think it is because of low blood flow in head and neck.
What could be the possible reasons of this ringing in the ears??
I've got big time ringing too, but some of it is from all the loud music over the years. Having ET has definitely made it worse. Over the years I have gotten used to it and I'm able to put it out of… 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
🌟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
I'm on pegasys 135 since December and after an initial drop, my counts are back to their initial levels
Despite my mpn consultant, which is abroad, told my hemae to just wait at leat 6 months to see how it goes, my docs here (I live in a different country) are rushing to conclude the treatment is not effective, and don't want to wait as told them
They are thinking to escalate to 180 for the next two months, and if nothing happens, drop it and then they said that based on current research… read more
I am not sure where "here" is, but it is a universal truth that assertive patients receive higher quality care. Passive patients do not. This is true everywhere. We have to be educated about our… read more
Thank you again