yeah googley... that's exactly how it happens. In fact, getting a dx that is firm on something is often a battle, much less informative.

trust me... what you just described is more or less what happened when i was dx'd with a tumor in my thyroid. i expected someone to tell me what was next or what to do or anything... but nope. i had to push and ask and read.

it's been a long haul bc i have multiple dx's and it's more or less been the same. i'm waiting now to find out if my aorta is at risk of just exploding with this syndrome i have... whether the answer is yes or no, i don't expect any support or major help in finding out what to do next.

your best bets are finding others with the illness, and read read read... beware of some stuff nonmedical people post online as nonsense spreads more quickly than fact. You might want to buy yourself a medical dictionary and then start reading the medical journals at a larger library.

best of luck