[Hopeful]

Hi Leelay,

I also have a morph of AA, MDS, and subclinical PNH. Like you, I went to the doctor because I was bruising like crazy. It also took 3 months for them to begin treatment (horse ATG/Cyclosporine) because they were having such a hard time with my diagnosis. I still don't have consensus on the diagnosis, but it matters less to me now as it appears to be immune mediated.

What is your PNH clone size? Do you have chromosomal abnormalities? Blasts? Did you get serum sickness despite being on Prednisone? Are you taking Cyclosporine?

I also recommend getting another opinion - especially when the diagnosis is so tricky and the treatments are so risky. Dr. Paquette at UCLA is another good option. He has a lot of AA experience, which is the rarest of the three diseases. He is also just a short Southwest flight away.

I am like MichelleD in that I will only use a transplant as a last resort, despite having perfect sibling matches. For me, the statistics are just too grim when there exists the possibility of other less risky options that will buy me time. My transplant doctor said I would have only a 20% chance of living 10+ years with a transplant. Also, there is the high probability of having chronic GVHD. There was another AA/MDS person (Mark John Yates) who took the transplant route 2 years ago. Check out his caring bridge site to read of his journey.