Fear And Sickness MDS

My MDS journey began in the year 2000. I was living in North London at the time, and I rarely went to the doctor, but I needed to get a lump checked out. My GP referred me to the local hospital (Chase Farm in Enfield), where I was. asked to provide a blood sample as part of the tests. Obviously, I didn't consider the blood sample to be a significant part of what was being checked, so when I called the GP and was told by the receptionist that the test had revealed an abnormality, you can imagine how worried I became. Without any warning, I was told that I had a blood problem, given a run-down of what it meant, and handed a leaflet to contact a support group when I went to the hospital for a follow-up appointment to discuss the results. It was done in a caring manner. I was told that I had ITP (Idiopathic Thrombocytopaenic Purpurrae) and that my major problem was a low platelet count, which would not have a significant impact on my life.To confirm the diagnosis, a bone marrow biopsy was scheduled. I contacted the ITP Association (an wonderful organization), and for the next year and a half, I went to the hospital approximately every quarter to have my blood checked. There were no further concerns regarding my blood numbers at any stage. It wasn't always a pleasant experience; on some occasions, I had to see a different doctor who had to familiarize themselves with my medical records.The worst encounter I had was on a scorching July day. Because not all of the attending rooms had windows, the doors were left open between appointments. I went down to see someone I had never seen before, and who I believe was on a temporary contract. I'm not sure if he had different treatment experiences, but I could hear him going through my medical history with another doctor and asking, "Why isn't she on steroids?" "She has to take steroids!" Before the appointment, my hackles were raised because steroids are occasionally used to treat ITP, but they aren't the standard treatment. It hadn't been the most communicative of meetings! As you might expect, I wasn't too upset when I moved to Dorset in 2002 to be with my [now] husband, which entailed switching hospitals. I was referred to the Royal Bournemouth Hospital's haematology department, where I met Dr. Sally Killick. She glanced over my file and informed me she wasn't sure about my diagnosis and that she wanted me to get another bone marrow test just to be sure. She described what she believed was a possibility (MDS), but advised me not to do any searching on the internet because there was a lot of material out there that was both frightening and improper for me. Needless to say, I conducted some research.She went over the results with me at my follow-up appointment after the biopsy and said they verified what she suspected - that the first diagnosis was wrong and that I had MDS. She said that several of my blood numbers were borderline in terms of MDS, and that my age didn't indicate MDS, therefore the initial ITP diagnosis wasn't surprising. My problem, as previously noted, is with my platelet count, which is below normal but has never been alarming; my white cell counts are likewise on the borderline. There was also a support nurse present at this session, with whom I sat and talked afterward, making sure that I had her contact information in case I needed assistance in the future.She went over the results with me at my follow-up appointment after the biopsy and said they verified what she suspected - that the first diagnosis was wrong and that I had MDS. She said that several of my blood numbers were borderline in terms of MDS, and that my age didn't indicate MDS, therefore the initial ITP diagnosis wasn't surprising. My problem, as previously noted, is with my platelet count, which is below normal but has never been alarming; my white cell counts are likewise on the borderline. There was also a support nurse present at this session, with whom I sat and talked afterward, making sure that I had her contact information in case I needed assistance in the future.