My husbands LDH was only 100 pts off of the normal range at dx. His clone size was 17. Both low enough that Solaris is not needed (we did not know that at the time and his old Dr. Started him on it) he is 30.
Did you find out your clone size? the granulocytes clone on your test determines the clone size.
PNH has come so far over the years treatment and understanding it wise. Although it effects everyone differently I assure you my husbands second dx of AA is much more difficult. As I can tell it seems AML is even tougher.
We were very scared as well at first and most of the info you get on a google search is outdated and scary! Solaris has made such a difference for a lot of pt and there are more and supposedly better drugs in clinical trials.
And PNH has gone away on its own in cases!
I hope you get good news and if you have any questions I hope we can help.
I think that Neil posted a link to a PNH support site. Between Marrowforums and that one we have learned so much and seen great stories of people doing well w PNH.
Best of luck!