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 Else Experience Internal/subjective Tremors?
Hi all, long time listener, first time caller here.
I was diagnosed with PMF about 6 months ago (CALR mutation, pre-fibrotic) but have strange internal tremor that occurs when I am at rest. It can be on any part of my body, arms, legs, torso, head - or a combination - and is mostly noticeable when I am at rest such as in bed or sitting quietly.
On occasion the tremors have woken me. My partner cannot feel the tremors and there has never been an externally visible manifestation. On other… read more
@A myMPNteam Member, do you think your tremors/vibrations are relate to your MPN or are they post viral?
Anyone Else Experiencing Memory Issues? Not Age Related But Connected To This Cancer?
Are you PV or ?
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.
Anyone Else Using Tai Chi For PV Related Bone Density Loss? Https://www.healthline.com/health/tai-chi-for-osteoporosis#benefits Check FB!
I found this amazing resource. As you can see I’ve marked a few pages. This is the most comprehensive resource on bones that I’ve found. So much good advice!!
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
Has Anyone Been Suggested To Try Low Dose Naltrexone To Help Manage ET ? .. My GP Who Is Very Integrative Has Suggested This.
Deb, I’ve just started LDN in a bid to reduce inflammation, pain and fatigue which may be post viral syndrome, symptoms of my MPN, or a combination of both (bit of column A, bit of column B).
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!
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
Polycythemia: Memory Issues
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
Wellbutrin is prescribed for depression and smoking cessation, but it is also used off-label for ADD/ADHD. So I take a small amount to fight the brain fog. It is working! It also helps fight my… read more