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Myelofibrosis ?

July 27th, 2009
She told me she was diagnosed with it in her 20s. Now she's 44. She was very ill and had her spleen removed. But somehow she got well.
She thinks now she still has it. I know that means she has had it all these years but is it possible to have it for 20 years without any symptoms up until now? Now she bruises easily, has leg cramps and has had runny nose for months.
My mom has medical education and probably she knows this stuff better than I do, but maybe she had this spleen enlargement due to something else and now she's well. Or could myelofibrosis really develop so strangely that her spleen enlarged, then everything was okay for years and now she's ill again?
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light1v3
replied March 30th, 2011
Yes, I have had essential thrombocythemia for over 20 years which eventually becomes myelofibrosis. Some of us are outliers - we are far beyond the normal patterning of the bone disorder. I suppose one must consider this a blessing, which it is.
I hope your mother is still as well as can be expected.
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replied April 28th, 2019
Thank you for asking at Ehealth forum!

I read your question and I understand your concern.
It could be initially another myeloproliferative disorder like essential thrombocytosis or polyctyhemia rubra vera. But anyhow myelofibrosis if of low risk,has 12 years median survival rate.
I hope it helps. Stay in touch with your healthcare provider for further guidance as our answers are just for education and counselling purposes and cannot be an alternative to actual visit to a doctor.
Take care
Khan
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