I have my first appointment with my new primary tomorrow, with the sole intent of discussing my PWS and hopefully finally getting down to the bottom of what else it might be affecting (KT, deep veins, etc.). I'm hoping that my new doc won't just gloss over it like all my other primary care docs; as I've said before, other docs over the years merely found it to be a curiosity, and not one of them ever told me that it could have potential, serious complications. Really wish that an observant doctor would have told me sooner!
Anyway - I'm making a list of concerns that I'm going to take with me on my visit. Chief among them are:
1) possibility of KT syndrome - testing necessary?
2) weeping rash on my birthmark, esp. in winter - cellulitis?
3) slight hypertrophy on my toes?
4) I feel cold all the time - connected with PWS, circulation issues?
5) Should I switch birth control - on hormonal b.c. now - potential high risk for clots/thrombosis?
I am finding that making lists and taking notes about the things I want to discuss is really helping me stay organized and not be overwhelmed.
For those of you who only just became aware of the risks associated with your PWS as adults - how did you go about talking to your doctor about it? Did you find that you had to really be a "squeaky wheel" about getting the tests and treatments that you needed? Did anyone here ever feel like they needed second opinions?
Just looking, I guess, to hear stories from folks who are/were in my situation - i.e.
, folks who are only just now addressing their PWS's as adults.