I was wondering when peoples APS started. I have been looking back over my life and when I was in my infant school and junior school I was bright, clever, was top of the class. When I started at my secondary school I was in the top stream for everything. Suddenly I started to slip mainly because I could not take in and retain the information for exams. I gradually slipped to the bottom classes. It was when I got pregnant that I started to get physical symptoms I would faint, got migraines, balance problems and then the DVT's started.
Does anyone have a similar situation where they think it may have started at an early age? I would be interested to know if it was the APS or if I am just trying to blame the APS, when actually it was just that I was not as clever in secondary school.
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Molly100
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Hi I was similar at my first school, although I was off a lot with many illnesses, however the brain fog did not start until I was 11 going on 12 then it increased until I found information gathering and retention difficult, I then acquired later in life B12 deficiency and a slow Thyroid which added to the problem also a sensitivity to gluten. I have improved to a certain extent, however recovering from a brain injury, but I do at least two hours a day brain exercises coupled with physical exercise when I can which helps me. MaryF
Oh gosh thank you Mary, I have recently given up work due to not being able to cope cognitively and it has made me reflect on my life and why and where APS all started. I too was off school with a lot of ear infections and I now have balance issues, hearing loss, tinnitus amongst other things. It appears that APS is now recognised and understood so much more than it used to be. Can I ask what brain exercises you do?
I try in the morning to start with Wordle, on New York Times, I try to get a good score with that, also Wordle Unlimited. I then move on to Connections, another NYT's one. After that I do up to 25 fairly hard crosswords a day, I also sigh tread music by going to fast paced Irish nights, locally, I have to play on the spot with no rehearsals, just tons of sheet music. I then try to recall the tunes by ear once home. So my own designed workout, however I may now download some games also, plenty around. I also when walking for provisions, write out a list for many shops as I live in a market town, I then walk and try and recall every item without the list, and there are always many items on the list, this I found hard to begin with but it has got easier. MaryF
My APS was acquired between the age of 18-25! Although I didn't get diagnosed until I was 42. I was hospitalised when I was 18 with a severe infection, then again when I was 25 with the still birth of my son. When I was diagnosed my blood records showed I didn't have APS when I was 18 but was positive at 25.Even when I had my strokes in my mid 30's, the tests were positive but the neurologist never followed up.
Like you-when I look back I was probably in my 30's when a lot of symptoms were kind of vague, I had heavy clotting periods and had a hysterectomy at 40. Had a lot of trouble falling pregnant with 2 kids. Can remember kids making fun of me when I got my words jumbled but managed to reach my late 50's when I had bilateral PE's and a DVT out of the blue. Went to a number of various 'ologists' when I hit my (still current) Rheumy on my first consult said 'I know what this is' I was sceptical after so many doctors and tests came up -ve, but my 2 tests 12 weeks apart were strongly triple +ve and I think he did another one about 12 months later same result. He said no point in doing further tests you have this for life. Still clotted on Warfarin and Rivaroxaban was ruled out by manufacturer so I am now on Clexane for life. Also have a great Haematologist keeping me on straight and narrow.
This is a new syndrome, relatively speaking but I feel I'm lucky to have very few 'bad' flares and as long as I keep walkings and accept I'll have a few foggy days and painful ones.
It is so reassuring to hear your stories. My mum also had APS but was never diagnosed. We used to laugh at her when she muddled her words. She had a heart attack at 70 years old and then had vascular dementia. The signs were all there, she had a PE in her 30s which they put down to being on the pill. It was only in her late 70s I when she had a hip op and I noticed that on her notes Antiphospholipid syndrome was written down!
I sometimes wonder what I could have done with my life if I had not had it!! But I lived within my limitations as I thought I was 'thick' and 'stupid'. When actually I was actually ill!lol Thank god for Professor Hughes.
Mine started in my late 20’s early 30’s, i got serious memory issues in my mid 40’s when I came back for my final year of my degree and couldn’t remember how to use any of the software. I still got a 2:1 with honors but it meant I could mo longer get a job in my chosen profession.
It is interesting re sticky blood. I was told that is what I had after the 4th blood clot, but when my daughter got pregnant 10 years ago she said 'mum there is no such thing as sticky blood, you need to find out more' which led me to Professor Hughes and London Bridge hospital, and the APS diagnosis.
I was diagnosed aged 57 but started with RA and Fibromyalgia four year’s previous.I started tripping up.Brain fog came and balance .I got worse waiting to see my regular rheumatologist and my husband had to support me to walk .I would have jerky movements and my right side would violently jerk across ,nearly pulling my husband onto the floor,.my right leg would give way.My rheumatologist was so shocked when he saw me he thought I had been to a + e after an accident.Took ages and his incompetence to finally get blood results showing I had cerebral antiphospholipid syndrome.I am on warfarin.I gradually got better with walking but reverted back into not being able to walk on own again after hospital incompetent telling me not to take my meds before a small hospital procedure.So I collapsed and ended up on several wards on venus meds puzzling doctors and scaring my husband and sister as I was so ill they thought I was going to die.It was drug withdrawal that had traumatised my body.Thankfully I am a lot better but still unbalanced with walking so use a stick.Think we are so different in our stories but it is good to read others
I wasn't diagnosed until after my stroke aged 42 but in hindsight the signs were there from a very early age. My Mum took me to a local doctor when I was about 5 or 6 as my circulation in my hands and feet were so bad. I used to bruise very easily too. The Raynauds symptoms got worse in my teens and twenties. My circulation virtually closed down when we used to go skiing. Concentration was okay also until my teens when a started to get migraines often with flickering lights as an aura. Heavy periods were the norm and I had an early miscarriage. My only child was born early and was only 6lbs. I had bad depression in my late 30s and was treated privately as an impatient but again with hindsight I was having periods of feeling vacant and losing words. I believe that my behavioural changes were due to APS as I had my stroke about a year later. I also finished a high pressure job in my mid 50s due to cognitive function and not being able to find words in very important meetings. However, I only recently retired at 61 after doing part time hours in a far less stressful job. I take warfarin and hydroxychloroquine and do exercise classes about 7 times a week. I also teach a form of exercise three times a week. I continue to get new age related symptoms including low B12 levels (I usually have al low RBC count and low folate levels). I cannot say for sure all this a relevant but I really added up after my diagnosis.
Hi, My daughter was around 13 years old, when her GP gave her the combined pill for severe cystic acne, which then triggered APS in the form of clotting on her lungs, which unfortunately was not picked up when she was rushed to hospital, fast forward to 16 years of age and the same thing happened again, and thankfully a different hospital picked it up. X
Looking back I think mine started when I was about 13/14. I used to have bags of energy as a young child then I had lots of flu type illness that left me exhausted. It was around the 80’s when it was termed ‘yuppy flu’. I was always exhausted, but ploughed on through my 20’s and 30’s. Constantly felt I was walking through treacle. Had trouble getting pregnant. After my first daughter was born I was diagnosed with hypothyroidism. Still felt exhausted and achy. Dr’s put it down to having young children. It wasn’t until about 5 years ago (late 40’s50) I persevered with my Dr’s and kept going back saying I just don’t feel right that they found out my anticardiolipin level was 121 - diagnosed by rheumatologist with APS.
I was diagnosed aged 36. Out of the blue. only diagnosed when I had a blood clot in one eye leading to a central retinal vein occlusion. i had really blurry vision in one eye so went to an optician who sent me to casualty. the hospital t diagnosed the eye issue but no clue about APS. my wife diagnosed me as APS a few months later and we had to change GP to get APS tests that proved her theory. she’d put me on half an aspirin a day immediately after my eye issue and my APS consultant said that had possibly saved my life. Can’t remember headaches or other issues before the eye issue. if my INR drops I get a severe headache now.
As a child, I felt that my failure to bleed a lot after childhood accidents, such as..., a scraped knee after a roller skating fall , was evidence of my physical superiority. Silly me. The bigrst health challange of my childhood was 7 cases of mononucleosis within 14 years. My parents had divorced, and one reason Mom gave was that my physician Father " pretends to be sick with made up symproms." Turns out, Dad had lupus. The doc who treated my last case of " mono" knew all this back story and he treated me with steroids. Dteroids? For a viral infection? But I recovered and it was only recently that I learned that that doctor knee I actually probably had lupus. Din
I was diagnosed at age 45 with APS after years of migraines and mini strokes. Circulatory issues then stopped, but intermittent fatigue continued until I went gluten free. Now, at age 68, I have more energy then at age 28!
The first time I had noticeable symptoms of APS would have been when Iwas 47, about 6 mins prior to my significant stroke, sadly my GP at the time did not recognize my symptoms for what they were. Prior to what would be my first noticeable clotting episode, unfortunately it was a big, disabling one, but thanks to diagnosis, and koumadin it remains my only episode to date. Although I did have a miscarriage between the birth of my two sons, which I am told could have been caused by APS. For that, I will never know was that occurred about 11 years prior to my eventual diagnosis, and the near catastrophic clotting episode. I say near catastrophic only because I survived my stroke. Admittedly being confined to a wheelchair for six months, felt pretty catastrophic at the time, Iam now able to walk with the use of cane, and AFO, but I still haven’t regained the full use of my stroke affected side. Of course, now knowing how rare, APS , is I am more understanding as to why I wasn’t properly diagnosed before I was left with a substantial disability.
Gosh thank you everyone for sharing your stories with me. I think it is time I accepted my limitations and work within them, I get so frustrated with my cognitive symptoms and balance issues. But reading what everyone else has gone through most at any early age I feel very humbled. You are all brilliant, thank you. xxxxxxxxxxxxxxxxxxxx
I feel like I was fine until I got pregnant. My liver stopped working right at the end of the pregnancy so was induced. Always wondered if that was aps. Just got worse over the years, later diagnosed with pots syndrome and now dealing with a movement disorder. Everythings gone through the roof at the moment after having an operation.
Hi, I started to get sick in my teens. Constant sore throats, debilitating fatigue, always falling over. GP diagnosed “schoolitis” and blamed my parents for getting divorced! Tonsils removed at 32. Symptoms worsened - got quinsy and pharyngitis instead of tonsillitis. Always had the most painful heavy periods with huge clots. Given the Pill. Made me feel terrible. Got giardia. My notes when onto my sister’s file so told giardia test was negative when it was positive. Continued to get worse. Aching joint and muscles. Brain fog. Convinced I was getting dementia. Laughed at by GP. Had two pregnancies - diagnosed with “pre-eclampsia that isn’t” and you must eat your spinach with super high Ferritin levels. Nauseous from conception. Migraines. Throwing up all the way through both pregnancies. Both babies forced out 3 weeks early after being kept in hospital for a month. Had Bell’s palsy which was actually a stroke. Post births had episode of double vision whilst driving on the motorway. Had had other eye symptoms. No trauma black eyes. Was seen at the hospital to investigate but no answers. Then 18 months ago aged 56 started having TiA’s and an elderly retired GP brought in to clear the covid backlog had time to look at my history and suspected APS. Did the tests 12 weeks apart and diagnosed as triply positive. On Warfsrin etc. No migraines if I’m in range INR but still have brain fog. Had to Google how many days in the year there are! Still have aching joints and muscles and crushing fatigue. Worst thing currently is I’ve been on crutches for nearly 6 months with non-traumatic bone fractures in my foot. Both haematologist and orthopod couldn’t care less…
I suppose it really began in late infancy. At 18 months I developed severe, life threatening ITPP. I was in pediatric ICU for 6 weeks. ( this would have been in Ft . Worth Texas in 1970 at the Amon Carter Center.)
My current hematologist recons it was a form of CAPS , and the high Dose steroids helps turn it around.
I did fairly well until university, until GI symptoms came along. Mysterious…. Marriage and miscarriages… mysterious…. Gastroparesis, multiple surgeries related to organ dysfunction and from gastroparesis… mysterious…very high RF numbers… mysterious …. optic nerve atrophy… loss of vision… Rheum ran the APS panel- double positive and had a DVT during the testing series.
I had a positive Wasserman test at 17 yo, a DVT at 24 and PEs at about 26. The ridiculous diagnosis for the DVT was rheumatoid arthritis nowhere near the joint, and the PEs were diagnosed as torn cartilage in the ribs. Suffered from crippling migraines from as early as I can remember, also abdominal pain, both very limiting for my life.
It is very likely I had APS from a young age. Just as older people are dismissed as unworthy of a doctor's time, so are the young, sadly.
To Molly100Fortunately, I never had cognitive problems. Always excelled throughout school. But as a very young child, had quite a few illnesses that could never be diagnosed. My mom would take me, very ill and week, to various doctors, no diagnosis, and then recovered fine each time. I was terribly anemic throughout life. Started horrific headaches around age 15, had them for over 40 years, finally diagnosed as migraines after the first twenty years of them. (they stopped after menopause) .
Suffered miscarriage, also have small mitral valve problems. (these are all results of APS and Factor V)
First DVT that was diagnosed after being in a leg cast for a fracture when I was 60. Was told due to the constriction in the cast. Given coumadin for 4 months. Then 10 years later, 3 DVTs same time in three separate leg veins, same leg. Had to inject with lovanox and 3 months on coumadin.
Advised to see hematologist. After several tests, diagnosed with a "double whammy" as the doctor put it----APS and Factor V Leiden Thrombophelia. Two blood clotting conditions. This was 10 years ago. APS is auto immune, and Factot V is inherited mutated gene.
He told me that I have been having blood clots my whole life. I guess all those childhood undiagnosed illnesses were blood clots. (my children had to be tested for the factor V, but they don't have it)
Now on coumadin for life, see hematologist once a month, and living with it.
Always have to be careful to make sure don't sit in car, bus, train, airplane, too long---have to get up and stretch. See a vascular dr. once a year with a dopler ultrasound of legs.
I live with it, and I am fine. I am in my 80's and still have an active life.
You can adjust as long as you are aware of what you have and follow through with doctors when you need to.
Hi Molly- Looking backbto my 20's I had numerous medical issues that I had no idea where they came from until I met with my specialist after being diagnosed with APS. He asked me about my history, which included optic neuritis and various other health issues. He told me that all of them and my severe migraines were absolutely related to APS. My APS was not diagnosed until after I lost 3 pregnancies. By the third loss my doctor ran more tests that showed the APS. In my 4th pregnancy I was treated with Lovenox and had a wonderful and successful pregnancy; however, the massive hemmoraging and migraines after I had my daughter were all APS related. I did. not develop my first (and hopefully last) DVT until I had COVID; the first and worst strain. I think this forum is a wonderful place for knowledge and sharing. I wish you well.
Hi Molly100, if I'm honest I can't remember any issues growing up I did have a miscarriage but wasn't diagnosed until 2009. I had been admitted into hospital as I became paralysed from the waist down. I had a saddle PE and was diagnosed with APLS , Lupus and LETM.
Me too exactly . Bright then unable to retain mostly mathematics . I did 2 jobs so not chronic fatigue or brain fog.
However , after Hepatitis C Anti Vital treatment , chronic fatigue , brain fog then finally a clot . Have read certain strong anti virals have been seen to coincide . ?
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