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Kamara,
I sent you a private message regarding the B12.
It is quite overwhelming dealing with this disease. I hope you can take someone with you to your next appointment. It's helpful to have another set of ears and someone to take notes. You can even ask them if it's ok for you record the appointment so you can listen to it later.
I echo AMZ904's suggestion about seeing a doctor who has treated multiple Aplastic Anemia patients. It is such a rare disease and you really want someone with lots of experience. I noticed you were from the Cleveland area. Did you by chance see Dr. Maciejewski at the Cleveland Clinic. I've only heard good things about him from other patients on this site. Outcome are usually better when you are treated at a facility with lots of experience.
Dr. Young at the NIH is also worth checking out.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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