I was originally diagnosed in 1986 at the age of 31 at Georgetown University where I was a student in an ophthalmic assisting program. I had been having visual "migraines" for years, some with numbness in my left hand, but never a headache. One weekend I had the beginnings of a visual migraine and noticed as it started to go away and my vision was clearing that I was unable to read. I could see very clearly, but I couldn't understand a word of it. It was like I had never learned, totally illiterate. Very strange! My only thought was, two years of studies for this ophthalmic assisting course and I won't be able to take the final!
First thing Monday morning I went to see a neurologist at GU. He sent me to see a cardiologist and a hematologist. My platelet level was found to be elevated at 670,000 and I was diagnosed with ET. I was instructed to stop taking birth control pills and was started on baby aspirin daily. I went back for follow-up a few times over the next month with no changes found and then decided on my own that I didn't need to see the hematologist anymore. I had been through the rabies series of abdominal injections as a kid and still had a real needle phobia so having blood drawn was/is torture for me.
Many years later, at the suggestion of a concerned doctor I was then working for, I went to see a hematologist for follow-up. Everything was status quo. I continued with my baby aspirin and had my platelets checked three or four times a year by my internist. About a year ago I started having almost constant migraine-like visual auras. My internist referred me to a neurologist who found nothing wrong. I put up with them for several more months until this past August when I went to my hem/onc for a second opinion on these symptoms. My platelet levels had risen to slightly over 1 million and my spleen had enlarged (my internist had never checked my spleen) and my Hct was elevated slightly. What a shock!!! I had fully expected everything to remain stable indefinitely and only to have to deal with the minor inconvenience of taking a daily baby aspirin. There were a couple of "hairy" weeks with moments of panic, depression, obsession with the disease, worrying about my children's futures, difficulty sleeping and morbid thoughts until I found this group.
My hematologist compassionately discussed the most recent findings with me and because of these changes I was started on Hydrea 500 m.g. twice a day. I must admit, it took me a couple of days to take that first dose. The first few times I felt like I was poisoning myself and I was really expecting nausea, hair loss and all those other things you equate with chemotherapy. Four months later my counts remain good (platelets 340,000, Hct 39) and I haven't had any side-effects at all. The visual "flickers" are still there, but much less intense and less frequent.
The knowledge and support I have obtained from the MPD-net group has made
the adaption to a chronic illness much easier. My spirits are good, I'm
full of knowledge and power to deal with ET and I feel great.
Julie ET
Manassas, VA
juliemoore@dirtybirdpottery.com