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I had a "complicated case" and finally received my correct diagnosis at the NIH. What a fantastic team. I had had 2 wrong dxs and advise to get a (unnecessary) transplant until I went to the NIH.
I'm going to doctor Mac at Cleveland Clinic because I don't want to travel that far this time since my ANC is low. Dr Maciewjewski trained at the NIH with Dr Neal Young and has done several research studies with him along with publications. Dr Mac has an excellent team as well. I'll ask him to have Dr Sekeres the leukemia expert, also at CC to take a look at my blasts and case.
Dr Mac can also work with my local team if needed. From what I've heard from many who go to the NIH more regularly, my impression is other than a few fairly local exceptions, the NIH doesn't get involved in consults with local treating hems. Still, NIH is the #1 place to go for an accurate dx and sometimes to get treatment option advise.
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AA/PNH Dx 1998, Warfarin, Soliris
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