Reading some of them will help you understand this "blood dysphasia" better. While waiting for permission to publish some of the ones I know, I'll start with mine.
I knew my flushed face could not be menopause. I was 70. There were other symptoms - burning in the palms of my hands, numbness in fingers and feet, cluster headaches, and migraine auras w/o a migraine. But I rationalized them away until the day I suffered a crisis in blood pressure. Feeling malaise and dizziness, I asked my friend, the school nurse, to take my blood pressure. BP was quite high - and each time she had me rest - and took it again - it was higher. At 220/150 she took me to the ER.
They paid immediate attention - line in for some sort of medication - and a complete blood count taken. When the CBC came back it seemed they almost accosted me in their concern. "Did you know your platelet count is over 900,000?" (What in the heck are platelets?) "How long have your platelets been this high?" (What in the heck are platelets?) "Do you have a cough?" (no) "How are you bowels?" (Please!) They did a chest X-ray, and then another. I was told I had an appointment with an Internal Medicine doctor the next day.
When my school nurse friend picked me up - I mentioned, laughingly, the fuss about my platelets - and what the heck are platelets? She said only "Oh -oh."
I met my Internal Med doc the next day; he was intrigued by the platelet count. I was given beta blockers and ramipril for blood pressure - and a list of tests I must take to discover if the platelet count was due to primary or secondary thrombocytosis. He explained the difference - I had either metastasized cancer or a myeloproliferative disorder. They had to rule out cancer of major organs first before declaring this an MPD.
But before that diagnosis, two weeks after the blood pressure event, I had a tachycardia event with increased cardiac enzymes which caused me to be taken by ambulance from the ER to the University Cardiac Clinic where a heart catheter (only 25% blockage) and an ablation (no more tachycardia) were performed. They did follow-up echocardiograms, CT scans, and declared my still elevated platelet count had nothing to do with inflammation in my body. Therefore, it must be an MPD, and I needed to be treated with hydroxyurea.
So little is known. I am Philadelphia Chromosome negative and JAK2 negative. It is apparent I have ET because I have no other cause, and when I stop the chemotherapy - hydroxyurea - for more than 2 days - the platelet count rises extraordinarily along with the symptoms of cluster headaches, jagged migraine optical auras, and peripheral neuropathy.
I also believe my platelet count was this high for several years before it was discovered.
My Mayo Clinic hematologist/oncologist said, in my HU chemotherapy, I am flirting with disaster to allow my white counts to get under 3 - and it would be better to allow my platelets to rise to 700,000. And this knowledge changes my perspective as a patient. It appears with this disease - we must all be our own advocates and learn as much as we can about our disorder.