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#1
Sun Sep 27, 2015, 12:18 PM
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Second Opinion
I love my primary doctor and feel he has done a great job but I think I owe it to myself to possibly obtain a second opinion and wondered who people would recommend. Location does not concern me I really just want to see someone who has significant experience with both AA and PNH.
From speaking with people to date I have the following: John Hopkins - but their treatment for AA is different to virtually all other hospitals in the States Duke - tend to have more expertise in PNH than AA Cleveland Clinic - probably one of the best in AA and PNH NIH - will only really see you if you are critical and more clinical trials Sloane K - I understand they refer complicated patients to Cleveland Clinic 
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#2
Sun Sep 27, 2015, 08:55 PM
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TASHMAC,
You did a good summary. Dr. Maciejewski at Cleveland Clinic has done research on both. You can always consult here. http://www.aamds.org/community-news/need-answers Ron Duncan
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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#3
Thu Oct 1, 2015, 12:09 PM
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Definitely see someone who has expertise with both AA and PNH. I took my son to Duke since that was the closest for us, although we had to fly there. You might want to join the PNH support group forum and ask for opinions there as well: www.pnhdisease.org.
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#4
Thu Oct 1, 2015, 11:23 PM
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Dr. Ron Paquette at UCLA is great as well.
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58 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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