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MEJ Thrombocythaemia - Internet forum dedicated to Thrombocythemia
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Re: New member
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MarkL
Re: New member
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: 6
Sep 9 07 11:06 PM
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My Recent Posts
Hi Sharon,
It's kind of ironic but I was having zero concerns with all this until I started finding boards like this and doing my own research. I had asked my hema, "so this is just something I'll have to take the rest of my life?" She: "yes, and you can expect a full, healthy life."
Maybe true, but now I'm discovering:
1) It wasn't necessarily true that I had to start meds. I'm definitely solidly in the "low risk" group and with no symptoms. On the other hand, like Joyce, over on the mpdinfo website said, "You can go from asymptomatic to symptomatic in a nanosecond." She should know..her count was in the 800's and she had a stroke. She disagrees with the current trend of not treating those who have counts below 1 or 1.5 million. This would probably be in line with my hema's statement, "you don't want to visit me after you have a symptom." On the other hand, there are the latest studies which say... - you get the idea. *sigh*
2) It wasn't necessarily true that agrelide was the best option for me. Have you seen the Swedish study results just posted in another message, which were from January of this year? They state pretty clearly that long term use of Agrelide leads to fibrosis, and there is no evidence that HU does. Yet my hema didn't want me to start on HU at this age.
back-forth-back-forth-back-forth...
I kept reading so much online today it was making me get anxious..so I finally just shut the computer down and went to the SPCA and thought about getting a dog.
God knows what He's doing with my body & life, even if I don't. And I know it will turn out to be better than if I scripted everything myself.
Peace,
Mark
p.s. I also take a high-potency B-Complex, which I have found to be very effective. I also take fish oil.
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