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Old Tue Nov 28, 2017, 10:38 PM
Sarah W Sarah W is offline
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Join Date: Sep 2013
Location: Kansas City
Posts: 5
Midwest

Hope to get to one of these someday. Too far away for me. I was just diagnosed today by my new hematologist. My hematologist 4 years ago never tested for PNH sadly, but it was also in a midwest county with only 120,000, so I doubt he'd ever had a PNH patient. I joined the forum back in 2013 when I had my first, very general bone marrow biopsy done, but I never posted because the cancer tests were normal and I didn't meet the criteria for AA or MDS. I had never heard of PNH till this month. My hematologist back in 2013 decided it was probably just my mild autoimmune medicine I was taking that was giving me pancytopenia. (About 1 in 1000 do get a little bit of low platelets on the drug, but not like I have, and not full pancytopenia.) Thankfully I now live in a large metro area with 3 million people. Glad to know why I've been so sick. I got much sicker than before over the summer.

Just had my second bone marrow biopsy last week. My hematologist will have them look there for PNH cells but I already have a PNH-positive blood test back. This disease is so rare though that I don't have any one with experience or expertise to talk to about it yet except my doctor. He used to live and work in NYC, but even he has only ever treated 3 other people besides me.

Thus I'd love to get to a conference sometime.
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