For years I was treated for asthma. Every time the pulmonologist tested and said no asthma. Two years ago my general physician decided to do a blood test and found an abnormally high red cell count. I have been having phlebotomy every 6 months and it helps with the polycythemia. Tiredness, shortness of breath, joint pain, and blurry vision all but disappeared. Now I am experiencing sharp pains in legs and symptoms are returning. Count from recent test at 17.9. I wonder if there is no cure for this.
I am 67, a very active female and a registered nurse. For 40 plus years I have had microcytic anemia, with very low iron levels and elevated blood pressure that never seemed to be under control. Three years ago, I had a heart attack (cholesterol OK). The following year I had a superficial clot in my right leg, 12 months later another clot in my left leg, and in between I had two very severe episodes of stomach pains which I later found out were infarcts of the spleen (diagnosed as reflux). I then could not walk for three months from the pain in my left foot which was covered in red stripes and purple toes (erythromelalgia). Then I had a thunder clap headache develop early one morning. The headache severely worsened over three weeks and I lost control of my right arm. I went to the hospital and had a CT. I had a clot in the sagittal sinus vein (like blocking a drain) and MRI showed old and new bleeds on both side of the brain. I had emergency surgery 12 days later. Due to not waking after surgery I was ventilated and sent to ICU. Ten days later I again declined, was ventilated and sent to ICU. At initial surgery, the surgeon did not expect me to survive the week. I was discharged 6 weeks later. I am fine. Nil deficits at all. I was back at work in two weeks doing medical reports. I monitor my own INR (warfarin). I do a lot of research into JAK2 and telomeres. I am actively involved with my doctor practitioner and hematologist in the management of my polycythemia. I have been exposed to radiation and also drank lots and lots of soft drink with artificial sugar (phenylalanine), a possible factor in the JAK2 mutation.
I was in the hospital and they just happened to find polycythemia. We cannot find the underlying cause, my liver and spleen are fine. I quit smoking 3 years ago though I am not around a lot of other smokers. I have no brain tumor, and no carbon monoxide poisoning. I have secondary, and I go back in 2 weeks to take a pint of blood, last time was 3 months ago.
Fortunately, my polycythemia was discovered during routine cholesterol tests at the age of 83. Complete verification came via the cancer clinic (the blood drawing apparently was unsuccessful). Since then I have been taking two 500 mg of hydroxyurea daily for 8 years. Though I frequently have several of the noted symptoms (for short periods of time), I have been able to lead a normal life (for a 91-year-old). The pills have kept the MVC (mean corpuscular volume) down consistently to about 45. The white and red cells are borderline. Since my relatives, parents and siblings are all gone, I have no idea if any of them had the problem.
Severe rib, hip, back and abdominal pain, shortness of breath, burning and numbness of extremities, constant headache, fatigue, and itching were the symptoms of my polycythemia.