@crsimon5 Hey Connie!! Don't meet many!! Best wishes to you. Yes! Get to a specialist!! Blessings!!!!!

Hi again@crsimon5,
I totally agree that it is important to see a true MPN specialist and not a general oncologist/hematologist who is expected to know it all as in my experience, they do not. I changed my insurance 1/2026 for that reason. I will finally see a true MPN specialist for the first time soon at UCSD in July. I waited for the head MPN specialist there for myelofibrosis and CALR so I hope to learn more too. I also have other referrals to UCSD from my new primary doctor for ortho/hand surgeon, dermatology, and even infectious disease to rule that out in my right ring finger as the last hand surgeon I saw in April 2026 said my MRI with and without contrast looks like either a bone infection or a bone space infection to him. I do have high platelets consistently on labs the past almost 1.5 years but nothing else. I have been taking low dose aspirin closer to daily since being on a trip out of the country and seem to be tolerating it. I guess it was very confusing to me also as the oncologist/hemotologist I had initially told me not to take low dose aspirin and then she changed her mind, kind of like how she first diagnosed me with essential thrombocytosis and then changed it to primary myelofibrosis one month later. So who know what I really have. It doesn’t matter as I feel just fine after being diagnosed almost 1.5 years ago and even after much excitement and activity on our trip out of the USA. I, like you, are doing all the things you mentioned that we can control.
Wishing you and everyone well.