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Old Wed May 15, 2013, 06:43 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Nikkinak,

It must be so hard to watch your son suffer I hope they can quickly determine the cause of this!

Make sure that your son is being seen at a hospital with expertise in these diseases, as they are both rare. It's always worthwhile to get a second opinion. A person can have AA and have a normal absolute reticulocyte count and/or absolute lymphocyte count. NIH believes that these are positive markers for response to IST. Given time, if he has AA, these will likely track down. Also, a person can have MDS without genetic abnormalities. What specifically does the BMB report say? Does he have an empty marrow? Has his doctor done extensive testing for other possible causes?

I remember having bad aches in my legs and neck. For me, it was when my blood cells were increasing.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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