PWS and possible KT Syndrome - freaking out a little!
So after 33 years of gracing the crust of this Earth with my presence and having done nothing with my huge PWS (covers much of my right leg), I've finally taken the first step towards getting some kind of treatment. I didn't count on it being so difficult to find information about first-time treatment as an adult; there's so much information out there for parents of kids with PWS's, but not a lot of information for adults treating their PWS's for the first time (what to expect, the amount of pain, bruising, time off from work, etc.).
I emailed one of the doctors on the VBF list because I didn't know where to begin. I described my birthmark (flat, some minor enlargement of toes, some cellulitis, some bleeding, darkening of the mark itself, increased vascularity), and he came back with the answer that my first step should be to go to my primary care physician and ask for a gadolinium contrast MRI to check for Klippel-Trenaunay Syndrome.
I feel fine. I have no pain with my birthmark. Apart from the birthmarked toes being a little bigger than the others (I wear the same size shoe on both feet very comfortably), I don't have any visible hypertrophy. I've fainted unexpectedly a few times, presumably from blood pooling in my leg. Oh, and I'm cold all the time, which is probably related to the vascular wonderfulness in my body. But otherwise, I feel great, completely fine.
If I had Klippel-Trenaunay Syndrome, wouldn't some pretty big symptoms have manifested themselves by now? Is it progressive?
I'm seeing my new primary care doc in a few weeks to look at the thing (my old doc just got thrown into jail for insurance fraud and selling oxy on the street!!)... but I guess at this point I just want to hear some stories from people with/without KT.
And I'm praying that my new doc has a semblance of a clue about vascular birthmarks and can help me get a correct diagnosis and a good course of treatment... which also has me feeling all bajiggity.
I'm kind of freaking out, and it feels better talking to people who really know where I'm coming from.