I first posted here a couple of months ago and have been mainly lurking since. I'm currently waiting to see if I am to be diagnosed with APS. I've had two very high titre positive results for IGg antibodies as well as a myriad of symptoms and my GP thinks it's a possibility. I was seen by a prof who specialises in Behcets as it was thought it needed ruling out officially, and he noted Livido on my feet and legs, and he was the one who sent off the bloods that came back positive.
I now have an appt with Dr Lester at Birmingham at the end of the month and I'm really nervous.. I'm no stranger to the appt/medical system having been in it for the last 6 years, but this one to me has so much attached to it. One of my main debilitating symptoms is constant 24/7 headpain and migraines, and I've not found any preventatives that make the slightest bit of difference despite being seen by severe and difficult headache clinic for the last 3 years. The idea that maybe the headpain might be reduced by heparin is one that I cling to, as right now it's my only hope of relief.
I normally take a list of symptoms with me, but have seen people mention on here a kind of brief history/meds/specialists which I plan to get written up shortly.
I don't know if I'm likely to walk out of my appt with a diagnosis (not that I want one if it's not the right one!) or if it's going to be another of those utterly disappointing days where yet another hope of having some kind of life is dashed. I know that treatment for APS does not signal the end of the debilitating symptoms, but actually having the right diagnosis and treatment would make a change!
I'm also nervous of being treated badly, it happens time and again that the dr has the bedside manner of a brick being thrown through a window and I'm made out to be making a fuss about nothing. I'm young and that seems to really go against me as the expectation is that I should be well and running around, not spending days on end in bed and using a wheelchair and crutches.
Any advice re: what to take with me symptom/list wise would be great, and ways of not being so nervous around appointments would be amazing!