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Hi Deb,
Do you live in Canada? What do you think of driving to the US for an appointment? The University of Rochester Cancer Center in Rochester, NY is an MDS Center for Excellence (not that you have MDS, but they are likely also very familiar with other forms of bone marrow failure). You could probably get an appointment much faster in the US!
If I were you, I'd check out there website and call to discuss your situation. In my experience, I have been able to get specialist appointments within a week. Without insurance, appointments with a specialist seem to run around $350/hour (this doesn't include any labs). Just come oraganized with your BMB slides and all blood test results.
I use to live in New York and remember driving to Toronto for fun. So hopefully, it's not too bad of a drive for you!
I wish you the best and hope the IVIG provides reprieve, if that is the route that you take.
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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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