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Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)Comment receiving replies
Hi Ginger. It sounds like you're going through some significant adjustments. I'm glad you have the courage and strength to finding solutions in care and feeling well again. I am curious what was the "aha" moment when docs decided to do the bone marrow biopsy? After 5 yrs of severe iron deficiency anemia, with so many life-altering symptoms that I had to retire, even though my plan was to work another 2 yrs (just turned 68). I've had a lot of tests, but still no diagnosis of any kind. I've implored my doctor to check my bone marrow, and nothing. Also, you mentioned about the numbness/tingling in leg and feet, and I totally relate to these symptoms. When my iron drops, I have these very things 24/7, but much more in the evenings and especially when I'm lying down...sleeping is sometimes a challenge. Just days ago, I was diagnosed with peripheral neuropathy in both feet, but worse on right side. I suppose they will do more tests. My hands and right wrist are this way, too. So much worse now after 5 yrs of IDA. Mine seems to be progressing to now neuropathy in my shoulders, especially right side. I am so frustrated that they won't test my bone marrow. Iron saturation % is always low (around 5). Oh, I have swollen tongue with small lesion on edge all the way around (but only when iron is low). Do you have any eye symptoms? Ugh. One of the most challenging symptoms when iron is low.
Replies to "Hi Ginger. It sounds like you're going through some significant adjustments. I'm glad you have the..."
Hi Wiggins32, I have had slightly low iron and now take iron supplements...Many of the symptoms you are describing, I have not had. My hydroxyurea was adjusted to 4 times a week 500mg after sores in my mouth occurred. No more sores..... My essential thrombocythemia was discovered after a JAK2 blood test procedure which took approximately two weeks for results. After seeing my oncologist for the first time in October, he scheduled the bone marrow test which confirmed all that I had been told. I am scheduled for a venous insufficiency test next month because of the numbness and also some small varicose veins in my legs. I do not have the eye problem you are having. I am so sorry for all the symptoms (problems) you are having...Praying for answers for you - answers and understanding what is happening, can at least give you a direction. I am sorry I failed to respond sooner - I missed your message.
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Hi Wiggins32....My nurse practitioner was the person who found the causative factor of my high platelet count by doing a JAK2 blood test. That took about two weeks for a diagnosis to emerge and a gene mutation was the causative factor for the high platelets and low iron for me. From there, she referred me to a hematologist/oncologist and he is the one who ordered the bone marrow biopsy. He did that to make sure that was all that was going on with my elevated blood platelets (no other type of cancer). I am fairly new to this forum and this diagnosis - ET or Essential Thrombocythemia, so I am learning as well. Be your own advocate.....my Primary Care Physician blew me off when my platelets were high - over 600 - last March - said it was no big deal. I am so glad that I happened to "only" see his nurse practitioner in August - she hit the ground running looking for and testing for any reason that the platelets were over 600. She is the one who ordered the JAK2 blood test. My oncologist was amazed with her. She was methodical with her approach and he said she did everything right. My iron was low and she put me on a low dose of supplemental iron. I was so blessed and will always be so grateful for her aggressive approach. I am doing much better now - had an initial outbreak of mouth sores from the Hydroxyurea they had prescribed. Was taken off for about 5 days and now back on for every other day and doing nicely so far. Platelet count is in the normal range now. Hoping you get the clear diagnosis soon.
Ginger