Quick Links
About myMPNteam
Powered By
I Have Persistent Nausea And Retching That Happens Regularly. Is Anyone Else Experiencing This Too? Or Is This Related To Another Condition?
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.
Ana, have you ever been checked for Hpylori? I had those symptoms for a couple of years and when hospitalized 4 years ago I kept insisting they check for that - despite having had over 300 blood… read more
Does Anyone Get Phlebotomy As Their Only Treatment. Also Does Anyone Have Issues With Instant Recall For New Laws And Procedures, For Work?
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.
Is There A Way, A Test, Blood Test, Etc. To Find Out When We Actually Acquired Our MPN, And/or When It Activated Itself?
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 Else Experiencing Memory Issues? Not Age Related But Connected To This Cancer?
Are you PV or ?
Anyone Else Using Tai Chi For PV Related Bone Density Loss? Https://www.healthline.com/health/tai-chi-for-osteoporosis#benefits Check FB!
I do hope we are headed in that direction!
Effect Intermitted And Longer Fasting On MPN
Is there any info about IF and 2/3 days fasting (only tea). NL doesn’t have any info about this. I have to start with med, but want to maybe postpone this.. try to create the best bloodwork possible..Is this possible via fasting! I know about the Mediterranean dieet. Pleas can you make me happy with an advise? Thanks
I love beetroot, which in Los Angeles we call "beets," but find it messy to cook and peel the fresh ones. I keep a can of sliced beets on the shelf and add some to many salads. Tasty and pretty… read more
Why Are Doctors So Reluctant To Use The Word Cancer In MPNs Or To Dismiss Quality Of Of Life Impact?
I noticed that both my hematologists avoid to use the word cancer when talking to me. When I got the diagnosis, the hematologist downplayed ET so much, despite the fact that I was in fever, pain and had so much brain fog I had to take a nap during the appointment. All these are ET symptoms, but apparently not for my doctor. So I was fine in his eyes. Being young was the reason
This was very detrimental as my partner thought and still thinks that ET is a bit like a headache, nothing scary, and… read more
lol... Just an old expression!
Is It A Symptom Or Stress?
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
Dear Janice,
As long as you understand that that is just your opinion and your beliefs, and not what science says, that is fine.
People do function on their beliefs, but it is ethical not to give… read more
Do Any Of You Have Bleeding From Lower Colon? My Colonoscopy Looked Normal. The Gastro Doctor Had Zero Knowledge Of MPNs, So No Help There.
I have been having these bleeding episodes from lower GI tract. Mostly bright red blood and enough that I would need a pad to manage it. Pretty much the same level of blood as from a serious nasal bleed
More recently I could find dried blood (probably bled throughout the night) and a couple of times blood clots
No hemorrhoids and no anal fissures they can trigger, no constipation, the colon seems normal under a very fast colonoscopy.
The doctor performing colonoscopy had no idea of what… read more
kisses, hugs back😘
Anyone With Anti-phospholipid Syndrome And MPN?
Anyone get silent migraines then develop anti-phospholipid syndrome?
Hi, I presume that I remain positive x 3. Take warfarin and baby asa with Jakafi. Only infrequent silent migraines now. Sounds like you’re ok… hope so .
