[ussoccer004]

Alright, so I had my consult with the hematologist who I thought diagnosed my condition with PNH, and turns out while I was in the hospital it was the internal doctor that ordered a CD (with some numbers) test and diagnosed me. The hematologist said it is a specific test that pin points PNH, she didn't see the Flow Cytometry test and said the HAM test is out dated and they don't use that test to diagnosed.

The hematologist did not know too much about PNH as I was led to believe. She also seemed distant and cold with me, like I was wasting her time. So what I will be doing is keeping my hematologist at the Veterans hospital because she has been a wealth of knowledge for me and has actually been supportive and treats me like a patient not a number or statistic.

I also found out that with the Soliris that it only helps the Hemoglobin, and if you do have an underlying issue with the bone marrow this has to be treated also. As many with PNH have AA or another issue going on.

I think at this point through the help with those on this board (and I thank everyone on here for the support you guys are great!) that I am going to see a specialist close to Orlando, FL which I believe is Dr. Carlos DeCastro for a consult and possibly see them there once a year and have them, along with my Hematologist keep in touch and hopefully be able to work together in this long journey.

I am excited also and lucky that NORD I believe it is, is having a conference about PNH here in Orlando, FL this week. I don't know if it was meant to be (Sarcastic) or what but I feel a little better. It is nice to know the support is out there with this board and NORD and other organizations.