How old were you when diagnosed with APS and what where your first symptoms?

[beckyb]

I think this is an interesting question and wish to see if any one had similar symptoms. I was 23 and it all started with a two week migraine, losing weight and chest pain. . . .

[jessielou]

Hi Becky

welcome and hope you are well today.

I was diagnosed at 46 however symptoms have been round for much longer. I had glandular fever numerous times in my teens. I had massive migraine attack at 19 (reaction to contraceptive pill). Fertility problems, many miscarriages. Then in 2007 i had a Dvt and Pe. Still not tested till i asked Gp for a test after seeing bbc tv news item about Hughes early last year. I have Hughes, fibromyalgia and lupus symptoms overlap.

Glad to meet you

take care gentle hugs Jessielou xxx xxx

[Gadgets]

Hi Becky

I was diagnosed at 45 but had similar stroke like symptoms at 38 and a very painful lung at 42 where I was resusitated in hospital. If i had not been admitted I would not be here! All my hospital events happened as a result of flying.

Cheerio

Garry

[Stannington-lad]

Hi Becky

I was 45 when I started with masive migraines and high blood pressue, I was 46 when I was Diagnosed with APS.

[kateb81]

Hi,

I was 18 when I was diagnosed. I had no symptoms until I about 3 weeks after I had torn my calf muscle. Even though I was initially checked for a DVT there wasn't one, but 3 or 4 weeks later I had a huge swollen hot leg which was a lovely DVT. Over the next week there were all sorts of things noticed like low platelets and heart murmer and after lots of tests (excluding things) I was found to have APS. They think my starting the Pill had triggered it... I have never had a neg test for APS but I am pretty lucky in that it 'generally' only rears its ugly head when pregnant (nod to my 4 lost babes and a smile for my 1 crazy daughter). I have always had bad headaches and a bit fuzzy on my memory at times but have always just put that down to me... Maybe that's the APS too!

Kate xx

[AnnieWilliams]

Hi. I was 39 when I was diagnosed after I had a DVT.

[Pippa]

I was diagnosed with APS at 48 following a mini stroke. Previous symptons were a suspected DVT at 18 followed by 2 stillbirths in my early twenties. (Hughes Syndrome had not been discovered at this time). Later I had severe migraines and epilepsy started soon after, also developed severe high blood pressure which culminated in the mini stroke. In fact MRI scans after showed I had a series of mini strokes.

Hope this is useful

Love Pippa

[MrBigDog]

At 47, (Sept. of 2008), I suffered bi-lateral PE, what the doctors said were "Showers" of clots through-out both lungs, too many to count. Spent seven days in the hospital on the Coronary Care Unit, hooked to a monitor and oxygen. Hematologist finally diagnosed APS after many blood tests over a six month period. Currently on warfarin, but I'm not sure it is enough, as my INR stays in the 2.0 to 3.0 range. From what I have read here and other sites, my blood is not thin enough to keep this from happening again. Have been suffering from fatigue, body aches, head aches, sleepless nights and occasional shortness of breath with chest pain. The doctor I'm seeing apparently knows even less than I do about this condition, and I am unable to find one that does here in Louisville, KY. I am a diabetic and also suffer from hypertension and arthritis. I'm scared that if I don't treated properly that I may suffer from something worse than before...

[lesley19]

Having seen Dr. Hughes on City Hospital in 2011 discussing a lady's APS symptoms and realizing that he could have been talking about me, I was referred to him and was immediately put on Warfarin. I had suffered for 25 years with, among others, DVTs, PEs, TIAs, had several mscarriages, had been tested for APS a few times but with a negative result, so at the age of 45 it was a huge relef to get the APS diagnosis.

[lesley19 in reply to lesley19]

Apologies for my typo - it should read '2001' not '2011'.

[emmaj in reply to lesley19]

one of my immunoglobin is showing as elevated but my anticARDIOLIPIN antibodies have gone away - but still waiting for a proper acknowledgement! did you get diagnosed on clinical evidence if the blood tests come back negative?

[lesley19 in reply to emmaj]

Hi Emma, yes. I was lucky enough to be seen by Professor Hughes who diagnosed me immediately from my symptoms, put me on warfarin, then saw me a fortnight later with the blood results which were negative. Many previous haematologists had simply gone by the negative blood tests so I was left in limbo for years. Hope this helps. x

[emmaj in reply to lesley19]

thats exactly whats been happening to me - one of the immunoglobin were positive, it really helps thank you x

[paddyandlin]

Hi Becky welcome to the group, as a baby through to my teenage years i had a number of things that did not fit i never had colds or flue but would have fits etc but never explained then when i was 16 had a Stroke which left me a wheelchair user a few years after that was diagnoised with APS and put on bloood thinners then in 2008 had another stroke was then put on waferin still suffering with other issues so for me its been a issue all my life until a few years after my stroke and when they put the symptoms with test they came up with APS they still investigfating other things as well so still plodding along.

paddy

[kathyD64]

Hi Becky i was 26 when diagnosed with APS back in 1990. As a child i had migraines diagnosed with transient visual loss. I had joint pains, sun sensitivity and can recall horrible echo sounds like music playing would sound faster and louder in my mind. as a child this scared me unable to explain how i felt i kept quiet unable to rationalise what was happening to me. As a teenager on donating blood i had a false positive syphyllis test. Headaches and vomiting associated with the contraceptive pill, and following a whiplash. I had venous blood clots in the sagital sinus part of the brain. A symptom i had when early pregnant before diagnosis was constant swallowing as tho i had to keep clearing my throat on the left something i experienced recently when my inr was low. Apparently on speaking to a consultant when in hospital last month he said venous obstruction/back flow issues can also cause your face to swell and this was also happening to me. These are more of the unusual symptoms i experienced that built up the picture of APS with a missed abortion at 18 wks and anticardiolipin antibodies were present with and without pregnancy.

sorry for the lengthy reply if i thought harder sure to come up with other symptoms but my memory has defo been affected over the years too.

[beckyb]

Thank you all for your answers its reassuring to hear people have similar symptoms to me i.e blood clots in the lungs, dvts etc and also that im not the only one who is young and has been diagnosed with this condition. When i meet new consultants( never seem to see the same one) they always say " are you sure your only 25 with all these conditions i thought you would be older" . . .

[Hidden]

Hello,

I was 39 when diagnosed. A decade after my first major PE.

I can now see that I had been having symptoms of APS since I was a young child

The symptoms leading directly to my diagnosis (combined with my health history) were neurological in nature and included gait issues, ataxia, chorea- jerky movements. Brain fog and utter brainlessness! I couldn't hold a thought and was actually thinking I had begun to develop a bad case of early onset dementia!

[ASigmon]

I was diagnosed at 48 after I had a stroke "out of the blue." Until then I considered myself fit and healthy with very few health problems. But in hindsight, after the stroke and blood tests confirmed the APS, it was clear that I'd had symptoms going back 20 years: miscarriages, livedo reticularis and Raynaud's.

[Herb]

Diagnosed with APLS at the age of 29, after having SLE since I was 12. I am convinced the APLS had been evolving at somewhere between these 2 dates.

[Hidden]

At 55 I was diagnosed with primary APS after I had a very unexpected stroke. I had always been very healthy, perfect weight, and total cholesterol was always much lower than than even the low risk ranges for heart attack or stroke (so much for that!). However, I had a long history of headaches, miscarriage, visual disturbances and memory issues that all made sense after the diagnosis. I do not have any other issues to date. I have been on coumadin therapy for 5 years. Like many others, the doctors say that I will be on it for the rest of my life.

[lovemyheart]

I was diagnosed at 42, after I had a stroke. I can look back also at my teenage yrs of migraines, muscle aches, shortness of breath when running, livedo reticularis, Raynauds. In my early adult years I had multiple miscarriages but thankfully two healthy children. I had a placental abruption and multiple blood clots delivering my daughter. they never looked for APS because I have hemophillia. Now i have balance issues, visual disturbances when walking, and an out of it feeling as well. Changed my life. thats for sure

[Texasgal]

I was just recently diagnosed with APS after a miscariage at 15 weeks. I have always had migranes. Lately I have had fatigue, and tingling sensations throughout my body. I have neve had a blood clot they checked me for APS because of my miscarriage. My face goes numb sometimes with tingling. I would like to know anyone elses symptoms to know if this is normal with APS. They have not stated any treatment. Told me they will start me on baby aspirin and heparin once I'm pregnant again. Any information would be great as I am new to all this. I am 33 years old and very nervous.

[jetjetjet]

hi - most have heard my story, but i was having back pains ,left side lower back shooting pains , went to e.r. doc asked after doing tests , was there any other symtoms you might of had , told him 1 week earlier i had a tingling that was head to toe , this lead him to finding all my clots . at the time i was 55 , had a quick dia. than most - guess i was lucky with this. i heard lots of others that wernt so fortunate. and went thru lots of problems. but in my opinion it was the tingling that was the most helpful to e.r. doc . bfn jet

[jetjetjet]

hay texas g have you had any luck with getting any tests from doc as we had spoken of before . hope you have, please let me know . the sounds of your symtoms had hit awful close to home with me . jet

[aubretia]

I was 51 when I had a PE out of the blue and was diagnosed a few months later after the consultant, who treated me, suspected what I had. I was very fortunate with the consultant as he had done some work with Prof Hughes previously hence his suspicion. All that was 10 years ago tomorrow so October is always a reflective month for me.

[christinebonner]

I was 53 when i found out, a nurse had ticked clotting on a blood test from by mistake and that when i had 6 months of many blood test to found out why. saw Dr Andrews at Medway hospital and told her about the 15 miscarries i had and she knew straight away what was wrong, i got to have the op on my elbow to help with the numb feeling in my hands. and after i had to have 10 days of injection in my tummy which i had to do myself, the op worked but i have found out that my spine is wearing out on C2-c6, plus i am diabetic and some times when i test my blood it takes a long time for it to stop bleeding.some one last year said to me you are all ways ill and i do find when i get a cold it takes a very long time to go

[pumpkincake]

Diagnosed at age 28 during my 10th pregnancy...miscarried the others. I carried my two daughters successfully with sub-q heparin. I had a long list of problmes with both pregnancies but I have two beautiful daughters who are 19 and 20!!

Had a DVT in 1986 and was put on heprin to resolve that. Looking back I believe this goes back pretty far as I went on oral birth control at age 18 in 1981 and felt ill and blacked out. I stopped it immediately but never went to the doctor for it.

[ANALIA]

My history is:

Anno 1997 - Diagnostic: psoriasis slightly legs. Medication: Cream

april 2009 - 29 years- Autoimmune hemolytic anemia - steroid medication.

Results of analysis

ANTI-cardiolipin. IGG (24) [lpg / ml] IGM (69) [mpl / ml]

Antinuclear antibodies (ANA) 1/320

Lupus anticoagulant - presence of lupus inhibitor

C3 (78) C4 (5)

AUGUST 2009 - Diagnostic ANTIPHOSPHOLIPID SYNDROME - medication: inmuran (azathioprine) 100 mg, Plaquenil (hydroxychloroquine) 400mg, 100mg aspirin

March 2012 - I do not take drugs for my decision

July 2012 - Results of the analyzes

ANTI-cardiolipin. IGG (21.8) [lpg / ml] IGM (3,4) [mpl / ml]

b2-glycoprotein IGG (7.7) [u / l] IGM (11.9) [u / ml]

I have no manifestations thrombosis, abortions, and others.

[donnabrain]

I was 43 when diagnosed, had been extremely ill got three years, but gp did not believe there was anything wrong with me and told me so in no uncertain terms!

There were clues before, with my 3 prem births and two threatened miscarriages, but during this time I was fit and healthy otherwise