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MDS Myelodysplastic syndromes

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Old Sat Mar 17, 2018, 05:36 PM
Bossywife Bossywife is offline
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Chronic

Is it possible that MDS RAEB-2 is just a chronic illness? I just wonder what it does to the body to have chronically low platelets? I mean obviously they have figured out the normal zones for bloodwork, but I wonder what happens when you are just always low (44-95).

Is it possible that nothing happens and you're totally fine... its just a number? My husband has had those low numbers for 10 years and he seems fine.

At this point I feel like it would take something else to cause him to get sick, but if you don't know what caused him to have low platelets to begin with, how on earth would you ever know what can hurt him at this point?

Obviously, i'm not complaining... I just feel this huge black cloud on the horizon and I just don't know what will cause it to land on us and that bugs me. (control issues much? ) Is it possible there is no huge black cloud?

I think the "why" of the disease bothers me the most. He was a Millwright for almost 30 years... I'm assuming he got it from Benzene (which he hasn't been around since 2008), so maybe the damage is done and nothing bad will happen.
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Husband (61) dx RAEB1 Apr 2015 after long term bad CBCs (first discovered Apr 2008 after an unknown infection had him hospitalized), currently on watch & wait with monthly bloodwork. Myeloid Gene Panel testing done Aug 2017, showed nothing worrisome. CEBPA mutation
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Old Sun Mar 18, 2018, 01:03 AM
Naive Naive is offline
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My specialist didn’t seem concerned that one of my tests was alway very high. He said not to worry because reference ranges were formulated on the normal values of 95% of the general population and I was one of the remaining 5% and my “normal” was just different.

This test result has never changed and has never caused a problem so I’m happy to accept that I’m one of the 5%.

I hope this is the same for your husband.
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