Hi Shazza, i am right there with you. I am given the MDS diagnosis so the doctor can treat me but my Fish and JAK1 and 2 and cytogenetic tests came back negative. So i consider myself ICUS.
For me my Anemia and Low Platelets are the mysterious blood symptoms. But for me a mysterious inflammation is confounding doctors too that could be the root of my ICUS/MDS. For others with anemia and neutropenia, Copper deficiency may be all that is wrong with them.
http://www.bloodjournal.org/content/...o-checked=true
I am getting ready to try marijuana CBDs to see what happens. They are suppose to be anti inflammatory and may help. I will keep people posted. My current HGBs drop down into the 6s and my platelets used to drop into the 6000 range before the miracle drug Promacta. Now they are stable at 50K-100K range.
Quote:
Originally Posted by Shazza
I've recently discovered that I've been neutropenic for 15 years which is longer than I initially thought (& wrote in previous posts).
2 years ago, 2 separate BMB's revealed hypocellular bone marrow.
Last week at my check up I was told that I have been categorised as having ICUS (idiopathic cytopenia of undetermined significance). Most information I've Googled on ICUS has been written fairly recently. It appears this is a new category - A 'not quite MDS' condition.
I don't have genetic abnormalities - well not any that have been identified yet. I'm told that as new tests are developed my samples are analysed for genetic mutations which may identify a MDS.
I've noticed there are a few people on this forum like me with unexplained low blood counts in 1, 2 or all 3 blood lines, hypocellular marrow & no cytogenetic abnormalities. Has anyone else ever been given an ICUS diagnosis?
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