I have well-managed ET with minor symptoms. I have seen others talk about “bone pain” and I’m not sure exactly what that means. Is it the same as joint pain (knee/wrist/etc.)? Or is it something else - such as sharp pains in long bones like the arm (radius) or thigh (femur)? Can someone please describe it in more detail for me & explain how it was diagnosed, and what your doctor suggested for relief ? ~ Thanks!

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.

I have ET and my mom had Mylodysplastic. I’m thinking about my children’s future

The drs tell me pv is super rare but that IM rare because I am only 32. I started having a ton of symptoms during the covid shut down..broke out in shingles for the first time, insane pain in my neck, upper back, ankles and knees, migraines every other day, brain fog, extreme fatigue and serious memory issues. So that was 2020 and I JUST FINALLY got a diagnosis this year! Its been a really hard few years getting through countless tests, phlebotomies and finally a bone marrow biopsy trying to get… read more

Any advice greatly appreciated. I currently have high platelets, red cell count low and white cells high. With this i have severe itching all over from being warm, to the point I could rip my skin off. Red rash around the neck and chest that becomes worse when I get warm. Hema/onc sent me for Bmb as he said I have all the symptoms of jak2 mutation, Bmb came back OK, anyone else in this situation that just has to get on with it as the cause is unknown so no medication can be given to lower… read more

Looking for a MF specialist in the Treatment department of OHSU. Apparently, Transplant is a different department than Treatment.
My platelets are at 33...very low. And with low Hemoglobin constantly in the 6.6 to 8 range (w/transfusions every 3-4 weeks), ...I need help!
Now that Momeletinib is FDA approved, another option available. Can Pacritinib(Vonjo) be taken with Momeletinib?
Appreciate any feedback,

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

🌟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