That is a relief to hear that it does not usually spread.* I have seen three doctors now who all think PWS.* It would be great if they tell us different when we go to Milwaukee, but I am not going to get my hopes too high when there is a high probability of having them dashed, though one should never stop hoping.* For me personally I have to take it as my son has a PWS, which I belive is probably true and than if the docs and this thinking is wrong, that will be great. If that makes any sense. But I know what you mean about misdiagnosis and doctors, my father died because of oversights and assumptions by his doctor and him not advocating for himself.* I don't have blind faith with the medical field and after a couple of pointless visits with our son already know to question everything. We have an appointment in a couple weeks with an eye specialist* to have his eyes* checked out as well.* I am not overly concerned about SWS, but had a doc say he had a 20 percent chance, but to put it politely she was an idiot.* We saw a more experienced doc who has treated PWS and SWS who said he did not think we had to worry about SWS,* but did seem to think PWS.* The eye specialist and derm specialist is our starting point and we will go from there with possible treatment if necessary, additional testing etc.