May I ask what age people were when t... - Hughes Syndrome A...
May I ask what age people were when they recieved a diagnosis? I was 33
my diagnosis came after a stroke, DVT and PE in the space of a week when aged 44, -- 13 years ago
Thank you, curious about ages of diagnosis. For me it was like recieving the news and no follow up has made me nervous about waiting for something to happen.
Please excuse my grammer should have said age.....my point is no aftercare...my gp never heard of this so no help there
Hi
A diagnosis of APS is usually based on blood test results and it would be normal procedure for your GP to refer you to your local hospital rheumatologist after you have had positive blood test results on more than one occasion.I waited about 3 months after referral for my appointment with a rheumatology consultant. I was 55 and had 5 children from normal pregnancies in my 20s and 30s. I just take aspirin.
I would like to know how much aspirin you take and whether this is something you do by yourself of under supervision from a doctor? My interest in this is that my daughter has tried taking aspirin to see if it would affect a permanent headache (since age 17. She is now 32) and it made no significant difference to her headache so she has now stopped taking it. She has decided to seek a referral to Professor Hughes but I wonder if she could do something in the meantime to help herself.
I'm very sorry to hear about your daughter. I take 75mg aspirin as a blood thinner on recommendation from my consultant rheumatologist who I see every 6 months. Headaches were not a regular problem for me - but the aspirin has definitely helped the circulation in my legs and feet, and I dont need a nap in the afternoon like I used to.
Have you considered an appointment with a cranial osteopath or a chiropractor because headaches often arise from muscle tension. Alot of people also grind their teeth at night and get headaches during the day because of jaw dysfunction. She also needs to see an optician to check her eyesight. I get headaches when my computer screen misbehaves and starts flickering!!!
Thank you for your reply and your thoughtful comments. However, we have pursued all the options you have referred to, and more. So far, no doctor has had any explanation for a permanent headache, and no treatment offered except analgesics which don't help. Anyhow, I am confident that if she sees Prof Hughes or another consultant, she may at last get some diagnosis which will help her in the long run. Many thanks again.
I was diagnosed in 2002 when I was 62 after having had a DVT. I am told I was born with the condition due to a an abnormal gene. My Mother was still alive then and when she was tested she had it too. Two of my four younger sister also had it. I am now on life long warfarin.
Regards Joyce
I had a constant myriad of diagnoses from birth on; generally auto immune related but mostly complications from allergies to most antibiotics.I was finally diagnosed with APS coincidentally approximately the same time Dr. Hughes was calling in all information, collecting it, organizing it, analyzing it in order to catagorize it with some criteria to call it something, which was approxmately 2009/10. I was diagnosed after a cerebral stroke at age 48/49. The stroke left me with a diagnosis of CNS vasculitus. They fattened me up on 80 mg prednisone/day till I had gained 120 pounds. I had the moon face, the hump on the back, all upper body weight on top of regular livido reticularis, the purple butterly rash (I'm lupus negative) on my face plus natural freckles. I had a cortisone reaction and turned bright red from head to toe and broke into unexpected, unprovoked, embarrassing persperation fits for no reason. They finally gave me the chemotherapy agent Cytoxan, which did get the CNS to what they call "quiessent' or quiet. Unfortunately the Cytoxan gave me bladder cancer. That cancer returned 8 times within 90 days each time until I changed urologists and had him perform the last operation and it has not returned in slightly over a year,. Unfortunately, one must contine to check lifelong because it is a fickle cancer and can return after being gone for many years. So usually, one gets checked twice a year. Funny, I've had a lot of strange diseases, but that Cancer word just really gets to me. I have never been so frightened of a disease. I have always known that somewhere in me I had what it took to fight most diseases, but Cancer hit me very differently right away. I felt in the defensive immediately. I acquired a certain humbleness. This was a thing I saw the surgeon sweat over. After this ordeal was brought under control my rheumatologist put together a complete medical history and was able then to test correctly for APS. Coincidentally, I just got off the phone with her and she told me my cardiolipins are continuing to raise and they are now past 70 whatever that means. I don't have the norms in front of me and I was so very disappointed I didn't think of asking. I knew I was in a flare and told her I suspected so, thus the tests, but she must not think it too serious to she would want something. As near as I can gather, she wants to wait and see. Well, I'm in some significant pain here and I don't like not having answers. I'll just have to resign myself to a Vicodin day, and some more ahead. Being the control freak that I am - I really don't like how it confines my daily actions. I won't answer the phone, drive or take on anything new when I take Vicodin. But at least it rids the deep down, don't even think of touching me, pain. I may get a little foggy or a lot foggy, but at least I am out of pain. I have also been getting blood pressures of 178/110 and higher~ no one seems to be worried about it.
So the answer : I was diagnosed with primary APS in April of 2009-10. Sorry about the rave. I did expect some evidence of a flare but not the my cardiolipids would be raising so quickly.
Really disappointing day,
Canary
I was diagnosed in 2004 at the age of 43. I had had symptoms back to childhood, and had plagued the docs constantly from the age of 15 when I started taking myself to the docs. I went so often and saw so many specialists I should have had a seat with my name on it.
i was diagnosed 3 months after having strokes, age 56. i have low bp, history of migraine sine teens..no follow ups aprt from inr tests at surgery -warfarin currently 7mg daily
Thank you all .....interesting to hear of others experience.
Hi
I have a long history of symptoms, lost precious babies, had clots, then finally diagnosed 3 years ago at 45 years old.
Take care gentle hugs love Sheena xxxxx 
Hi hon
Yes I've been lucky three of my babies made it, pre diagnosis and treatment. A lot of us have struggled to get diagnosis. Not enough knowledge out their, but we're working on it!!!
Love n gentle hugs xxxxx
60 years old....I consider myself fortunate...as a young woman I decided not to continue to take birth control pills ...I felt my legs giving out under me....circulation issue.....who knows what would have happened ..................
I was diagnosed at 33, but looking back had symptoms for years before that!!
I was diagnosed the week before my 30th birthday following a large dvt. The diagnosis has recently been withdrawn by St Thomas's (i'm now 44) but immediately reinstated by Prof Hughes! I had preventative treatment during my third pregnancy and for long haul flights and have recently started heparin injections again which have been marvellous for my headaches.
I was diagnosed when I was 45. Though, as other have here observed, I had symptoms going back into childhood. I remember that during my rough and tumble, tom-boy life, when I scraped my knee or cut my finger, I rarely bled much. My physician father taught me a bit of bleeding is actually good as it washes away germs. Buti often he to really work by squeezing and pressing to get various wounds to bleed, even a little bit. I decided my body's tendency to not bleed was evidence I was brave and strong --not like those pansies who bled and bled ( and screamed ) when they cut themselves on barbed wire or a piece of glass.
Gina i agree. I was definitely one of those rough and tumble tomboys who always found tar on a beach or mud in a playground! I played with an Action Man and enjoyed getting into scrapes but never bled much. I remember one day as a young girl getting bitten by a cat and tried shaking it off in a blind panic. The cat hung on and my wrist was cut to pieces but i was shocked to see very little blood.
I was 24, in 1980, when I was diagnosed with 'lupus anticoagulant'. Ten years before after going to the doctor with joint pain they were talking rheumatoid arthritis but not quite. It was a mystery. They settled on 'growing pains'.
I was 20 , I had my first clot at 19 but was misdiagnosed , at the age of 20 I had 7 pulmonary embulisms ... And was finally diagnosed after going through a unnecessary surgery and a very rough year . I am now 33, I have four miracle children all beautiful boys and since my last baby was born I've had a stroke and a bunch of dvts in my leg . I'm a fighter , and listen to my drs ... I finally quit smoking after my stroke Feb 29, 2012... Yay ! I smoke water vapor ciggs
52, following dvt
What a great and informative site ...so glad i found you all
Diagnosed at 31 after developing kidney failure. I'd had symptoms since childhood though.
48 ten years ago. After surprise open heart surgery, clot extending from left wrist to elbow and a stroke all within 3 weeks. This caused further testing finding APS.
i had chest pains on an off for about 2 years but thought it was connected to heart as i had open heart surgery at 2 years old. eventually they found i had PE now on warafrin for life as tested positive for APS and Lupus anticoagunault
Stroke at 16 second stroke diagnosis 2005 second stroke 2008 was put on warfarin. This can effect you at any age
34 - diagnosed a week ago - so its all new and a bit scary to me. Tested due to late miscarriage at 16 weeks. Lost a twin earlier in the pregnancy at 9 weeks and in previous pregnancy early miscarriage at 7 weeks. Currently waiting a referral - wonder if best to push for this via my GP to St Thomas.
Gemma2012 I was eventually diagnosed at 49 but had been ill 10 years previously and now with a much repaired memory know I had headaches as a 4 year old. I had a polyarthralgia in 1983! But I had an active career requiring physical fitness for 30 years+
I was 34 yrs old
