Thank you all for your replies!  You are absolutely right Rick about me needing to be screened.  I have had to be very assertive and have certainly ruffled some feathers by insisting to continue testing until no question remains.  I have had some blood tests, some of which were suspicious, and an ACTH stim test 2 days ago (which I do not have the results for yet.) Despite some questionable labs, my symptoms and family history, the endos have been very reluctant to go further despite my concerns. Since my cousin is out of the country, I don't believe she would be able/willing to obtain the genetic testing. I will have to discuss this with her. I am amazed that so far, the doctors I have visited seem uneducated (and unwilling to educate themselves) on CAH.  One of them is the one that told me ALL of SWCAH was due to 21 hydroxylase deficiency.  From the information I have obtained over the months, I did not agree.  Thank you for your confirmation! 

Even If I do not have LOCAH, and instead have PCOS with adrenal insufficiency, (or something else altogether) I wanted to let all on the board know that you are truly a blessing to eachother, and those of us searching for answers.  It is difficult to be told time and time again by doctors that you are the picture of health regardless of  your symptoms, family history or labs.

 

Sincerely,

Melissa

 

Melissa: new to board/question (Feb. 5th, 2008   12:18pm)
stephanie: re: new to board/question (Feb. 5th, 2008   6:45pm)
Rick: re: new to board/question (Feb. 6th, 2008   1:52am)
Melissa: re: re: new to board/question (Feb. 6th, 2008   9:45am)