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I don't know what current thinking about CALR is. It was discovered as an MPN driver mutation so recently that the landscape changes faster than I can track it. It may be that there's something else that makes yr doc think you are PMF, and getting him to articulate that would be good. Fingers crossed for your next visit.
You certainly have the right to prioritize your medical issues and treatments. I try to follow advice most of the time, but I have told my GP that my bad back and aging teeth have more effect on my daily quality of life than my heart or blood problems. When your back gives out or your filling comes loose, it's hard to care about stuff that doesn' t hurt.
But docs respond to what they can see, which is generally not pain or discomfort. Except for my dentist. God bless her, she believes me when I say my tooth hurts, and she doesn't mess around.
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Hi again nohrt4me,
Thanks again for posting. It was so nice to have someone just listen to my concerns. Honestly, I think just because I asked if a bone marrow biopsy might be helpful to determine what I have is the reason my female O/H who seems not very experienced in MPNs reassessed what she thought I have and came up with PMF. Since I redid my lab work yesterday after about three weeks and had such different now normal results on many of the tests she ordered perhaps she is as confused as I am. Now the labs she ordered show I can take baby aspirin as my VonWillebrand tests she ran are all normal. Prior she had told me not to take it although the standing order she has at the pharmacy is for me to take it. I have never taken the aspirin or anything else because she sent message to me saying not to take aspirin. I really do not like the many non in person and not even a phone call for directions and thoughts on my case from docs at Kaiser. There are just so many discrepancies in my situation and I have done nothing differently, just living my active positive life here with my daughter and family. Yes, I am now 65 and realize that comes with supposed sickness issues which I have never had and do not care to if they do not exist. My big question now is why are so many things in my case returning to normal on so many labs when I have done absolutely nothing differently than I was doing before? Honestly. I am thankful to God for that and will continue to persist in my healthy lifestyle keeping myself very busy most every minute of the day and sleeping well each night because of keeping very busy I feel. Yes, I do still have elevated platelets and white blood cells but not at level initially determined for some strange reason. Yes, I still have my non painful very enlarged right hand ring finger proximal (closer to my knuckle) joint original unaddressed successfully as my chief complaint. I did have a young female rheumatologist at Kaiser flat out tell me she did not know what I have and said sometimes “docs never know but treat what it might be”. At least she was honest and since I have no pain she could understand why I declined treatment of my joint issue with a steroid she offered. Once again, I am thankful to God I have no pain and have never had in any of my joints. I think I asked for bone marrow biopsy because I do have two really swollen non painful joints and thought maybe that could help identify their cause, but it did not.
I am glad your good dentist listened to you, especially when you truly have something that is hurting. Oddly enough, at the dental clinic is the only place I do not have elevated BP readings and my hygienist actually was surprised to hear my BP has ever been a concern at doctor visits.
Thanks for letting me vent and teaching me a few things too.
Stay positive!