Hi ideachaser1,
Thank you for sharing. My BMB says what you posted about yours. I am 65 though. So you are lucky not to get this diagnosis until 78. I do not have night sweats and never had the “feeling hot issue” common to females when they get a little older so I am not complaining. That is good to hear CALR is still the lesser of the evil genetic mutations to have also.
I did finally see my primary doctor two days ago, a new one since the first one I chose, once in Kaiser Senior Advantage Plan when I recently turned 65, canceled my appointments four times! He was a very good listener thank heavens. He ordered MRI of my enlarged right sternoclavicular joint and made sure I had an appointment with a hand specialist for my enlarged deformed right ring finger enlarged swollen proximal phangeal joint also. I am blessed to have no pain in any of my joints. He did say one can have arthritis with no pain which sounds like me. He said I do not have hypertension and just White Coat Syndrome so no need for BP meds, just take my BP at home every morning and record it which I have been doing since December 2024 when all my “medical issues” began. It was 122/68 plulse 65 this morning and similar yesterday morning although I had a busy day of work ahead yesterday when I took it. I think I have relaxed some since now having a decent primary doctor who actually sees his patients!
Now if I could just get a knowledgeable myeloid proliferative neoplasms specialist. In the meantime, I have appointment with the O/H I have seen once who insisted I have ET. I asked for the BMB which surprised her but she ordered. Then she sent me a memo that I might have Primary Myelofibrosis. We shall see if I can get a second opinion which I know would currently need to be through the Senior Advantage Plan I have. Since the change of having what we supposedly have is 4 in one million, I suspect there are not too many of these kinds of specialists. In the meantime, I remain feeling good and just keep my health lifestyle I have done for years. It is a beautiful sunny day here after lots of rain here, so I am finally getting to plant so flowers that needed to be repotted.
Hope you are having a blessed day in Florida.