[Susan]

Hi,

I was dxed with PNH/AA in 1998. It took a while to get the diagnosis. I went to several good Chicago area hematologists but was dxed with ATP, then MDS, then AA vs MDS. I finally self referred to NIH in Maryland and received the correct diagnosis. Should you have trouble getting answers about your illness I strongly reccomentd the NIH for the "complicated cases." If you have PNH we can talk here but I spend more time on the PNH website. I do see the value of this forum though, especially if you have PNH and other diseases. You can then check out what treatments others are getting for AA or MDS. Some have both MDS and PNH, or like me, both AA and PNH. PNH had some risks such as potentially deadly blood clots so you will want check out the PNH disease site for sure.
Susan