I started noticing issues with brain fog about 2 years before my MPN diagnosis. Went to a neurologist for a full work up. They said it was stress. Now I know differently since I got the MPN diagnosis last year. Multitasking is impossible. I've flooded rooms in my house TWICE forgetting to turn off the faucet. Today I had to hang up my car keys because I got out of my car without putting it in Park. Thank God it was in my driveway and I could jump in and break. So I don't trust myself behind the… read more
I have learned so much and felt so much better since joining this forum last week. After most docs saying "not related to MPN" it was a welcome relief to know I was just a "normal" MPN patient. Now I can fight the symptoms one at a time instead of thinking I am losing my mind.
Well I really fogged out yesterday when in time see my hem/onc. It comes and goes. Today I could win trivial pursuit.
Lorraine, my only side effects from hydroxyurea have been loss of appetite and insomnia/nightmares. The sleep issues got better after moving it up the morning instead of bedtime. But overall, I feel much better on hydroxyurea.
Thanks all. I just moved my appt up to this week with my local hem/onc. I also asked for a referral to Anshutz in Denver. (Their doc is actually all over that "Patient Power" website as a researcher in MPN.) And I told my local office to make sure they added Iron and Vit D to the thousand other tests they order. So I feel better...moving in the right direction. And for all of you that are new to this Vit D issue....it does directly correlate to numerous cancers. I can't even tell you how many women, including myself, found out our Vit D was extremely low when we were diagnosed with breast cancer! And yet no doctor ever puts it on the list when you're having blood work!!! Arrggghh!! Doctors! Thanks for all your support everyone. (The estimate for my car is $1950!! Good grief.)
I think we are kindred spirits in our symptom suffering. Don’t let these guys tell you these symptoms and events are unrelated. Of course they are related. Just because the systems differ doesn’t mean that our body’s responses to MPN havoc doesn’t have system overlap. These docs like to compartmentalize everything by specialty; but our bodies are a whole organism full of interrelated systems, functions, and responses to being out of kilter because of a myloproliferative neoplasm.
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