I read all the above posts and this one is for them all.  (I hope)

It is indeed fearful what can go wrong and it is indeed important to act before time takes its toll.  I myself have a daughter with possible LOCAH or PCOS or both, and she has cried on my shoulder over what's happening to her.  And it so "slight" compared to what I have read on this BB.

I can never face that mother and daughter I wrote about ever again because of myself - my own feelings of total inadequacy and irrelevance.  I just wouldn't know how to act normal.  Do I act as if I can't see what's happened?  Do I give sympathy?  It's no one's fault except possibly the ignorance of the health profession's.

Diabetes is treated quite successfully after a century and a half since it's discovery.  CAH and LOCAH are so far behind compared to diabetes.  But we want help now, while there's still time.

What the other ladies on this thread wrote sounds like excellent advice.  My wife and I have considered going to New York if that's what it takes.  (temporarily)  If this Dr. Schteingart at U of M doesn't pan out for us, we will at least demand blood and send it to Dr. Maria New's technician ($600) and try to get proof there is indeed a problem. 

Forgive me, but I sometimes feel like shouting at these doctors who act like gods and condemn us to no service.  I know that's not the way.  But my wife has way more than once told a doctor what he should do and has surprised the doctors that she was right.  (broken knee, polycystic ovaries, etc.)

It's so good that this board exists!  Keep on keeping on, ladies...