After seeing prof Khamashta yesterday at St. Thomas he told me I have antibody pstive antiphosplipid. After nine months of at least ten TIA, two seziuues I have a tick in the right box. My local hosptial A and E sent me home many times before a stroke dr took me seriosly and did all the usual stroke checkee and refreered me to a rheumelogist and after been supported but no clear answere and addmitted to my local hosptial over the easter hoildays , i begged for a refereal to StThomas. Im not pleseaed i have a diagnoisis and hope was my INR in range i wiii stay symptom free, but it is good to know im not going mad, or wasting the nhs time and if i do have to go to my local Aand E again i will insist they listen to me. I would not give up with out a fight. Prof Khamashta was graet in his only words he eats, drinks and sleeps with aps, so f you want answere ask to be reffered to him. My antibody that is postive would never of been found at my local hosptial labs but StThomas do more detailed tests. To all ANXIOUS or undiagnoised patiens insist for a referral!
aps postive at last.: After seeing... - Hughes Syndrome A...
aps postive at last.
So Pleased for you Dulcie...well you know what I mean! It is good to get a dx because as you say at least if the worst happens people do know what to do OR YOU CAN TELL THEM and they generally will take you seriously.
Prof Khamashta is great isn't he and even if you had been seronegative with all the clinical history they still would have given you a dx and respected the decision and treated you accordingly. I too would also recommend referrals there if only for peace of mind and clear direction.
Hope you can relax a little more now knowing that you will be well looked after and supported. I know I have and it goes a long long way I can tell you.
its good you saw him with a positive outcome of a diagnosis and as you said you were definately not imagining your symptom or going mad 
but i know exactly what you mean! i will be making a referral to s t's on mon i have wasted too long waiting for answers to my current problems other than fibro - i just dont get why doctors can work together collaborate as im sure... fibro can also be what some hypocondriac get labelled which then makes it impossible for some genuine sufferers im sure...
there no doubt there are many people with genuine undiagnosed endocrine hormonal reasons for their symptoms! it sadly is a catch all term that in its self sounds an awfully difficult condition to live with....
for me i just want someone to listen to me when i say i sleep fine doctor i just cant wake up until late morning not for them to say you are having non restorative sleep! my hubby can confirm i also snoore lady like - gently so i know when i sleep well and definately as i am at present know when i dont sleep because my brain cant switch of as so stressed not being listened too having to search for answer myself...
from my experience of being on warfarin since 1990 it works really well and you will soon get in tune with your body and tell when yur level is right because alot of the symptoms such as headache brain fog fatigue will seem to go
be positive about your diagnosis it is best to have it get empowered learn as much as you can you can lead a normal life with a normal life span as anyone else out there kathy xxx
my husband too has being going to st t but has always tested negative until last time now hes on warfrain how long does it take for the brain fog to lift? its driving him mad hes been on it for about 3 weeks he also found doctors unhelpful made him think it was all in his head dont quite know if hes been diagnosed yet nothing has been put on paper all our gp says is hes got high blood pressure x
I find the brain fog comes and goes, but it is worse if my INR is low. Im one of those people that can tell it is low, but all the professions tell you, it impossible to know other than a anticoagulate Nurse that i met at St.Thomas. How long has been on the warfrin and has he reach the target level that the droctors want him to be at?
hes reached his target level of 3.5 and hes been on it for 3weeks
thanks anyway perhaps it will just take a little time to work lots of people say it works for them fingers crossed it will work for us x
How does one get an appointment with Professor Khamashta? Any contact info would be greatly appreciated. I am in Vancouver, Canada.
Hi Silveinvan,
you may worth look at the private clinic as the st T's is NHS you can look at the London Bridge clinic where most of these docs work privately as does Professor Hughes . You can self refer to here or get your doc to write
Paddy
Thanks Paddy,
I wrote a note and have already received notice that she is forwarding my letter to Dr. Hughes. I, like so many others, keep getting told that this is in my head. I was diagnosed in 1996 after multiple miscarriages, but now the hematologist is gone and no one believes I have APS. (Even after using Heparin and aspirin to carry to term; the latest hematologist said it was a 'fluke' and had nothing to do with the Heparin)
I've dealt with the fatigue for years, and all the other associated auto-immune symptoms: lymphocytic colitis, tinnitus, tingling skin, migraines and now, the unbearable joint and muscle pain and unbearable fatigue. I am on no medication and am at the point I will fly to freaking London.
Has anyone been to St. T's from overseas? What is the wait time and more importantly, (GULP!) what are the costs incurred?
Many thanks,
Sive
How do you get proper treatment when the dr you see at Lupus Unit St T says he will see me in one year!
APS Diagnosis
At last
Stroke and APS
Maybe not APS after all 
