So after much MUCH to-ing, fro-ing and indecision over very high positive APL blood test results (interspersed with normal results) I was finally put on a Clexane trial.
So far I've been self injecting for 8 weeks or so and the results whilst not as "lightbulb" or instant as I had hoped have been pretty impressive. Although the CONSTANT headpain remains, it is much reduced, the sharp stabbing pains in my head and ears barely happen and I've not had a single classic migraine since starting when before treatment I was at a point of having at least one a week. My balance and leg pain is overall doing better, I no longer need an alarm for EVERYTHING whereas before nothing got done without numerous alarms and reminders and I don't have the visual disturbances or weird tingling on my back.
But now I'm scared that when I come off it my life is going to go back to being harder, more painful and forgetful again.
My doctor- a name from the Hughes syndrome society- is not particularly bothered and said he doesn't think I have APS as I've had negative results and my 3 positive results have all come from liverpool labs (bizarre!!) but was willing to let me try clexane although he said even if he thought it worked it may just be placebo....
I'm now considering going to see Prof K but the journey is terrifying....!!