Hereditary

[amy1808]

Hi me again , sorry . I was diagnosed with APS last September after several  TIA'S. I'm on warfarin now and still getting to grips with it 

My 20 year old daughter had a TIA in March , I told them I had APS and had to battle for them to test her . Her IGO came back as 14 and she has to be retested again in a few months , today she was driving and got pins and needles in her leg , she pulled over , calmed herself , took a aspirin and waited until it had gone . Being a 20 year party animal , I'm not sure if it's her lifestyle as well , she is absolute exhausted most of the time too . She has Vasculitus as well and has had a kidney transplant so I'm a little worried . 

Just received my book by Kay Thackray today and read about it being hereditary . My mum died in 1991 of a stroke at 56 , they also said she had M S . I think more like APS 

Amy is at Manchester Royal on Friday for a check up on her kidney so I'm going to insist they send her to see Dr Ian Bruce immediately 

[amy1808]

Vasculitus killed them both 😞

[Medsil]

Hi Amy,

My son was diagnosed with "Sticky Blood" 9 years ago following 2 heart attack & dvt, he was in Australia fortunately, they put a stent in his aorta , put him on numerous medication, & he returned home to GB 8 weeks later.

He cannot get diagnosed  as having Hughes Syndrome, but we know he has it, the specialists only gave him one test & said he did not have it. He had the test at Manchester, with Dr Ian Bruce, who he only saw the first time he went.

He is having a struggle , bad skin rashes, aching joints, brain fogs, to name but a few.

He has a building firm & works really hard. We feel for him & wish he could get some help from somewhere but do not know where to ask him to be refered.

Hope your daughter gets  some good treatment as it is a worry for all the family is'nt it?

[amy1808 in reply to Medsil]

Hi , I'm under professor hay at Manchester Royal , he seems to be ok , it was my heamatolgist from my local Hosi that referred me to him as my symptoms were so bad she didn't know what to do . I'm a very direct person so perhaps he needs to put his foot down xx

[edgewater100 in reply to Medsil]

Has he been tested for Lupus?

[amy1808 in reply to Medsil]

Forgot to mention the professor I see at Manchester Royal sits on the hemotology board so is quite well respected , as soon as he read my notes he was his gob smacked that I hadn't been put on Warafrin straight away . I have been on it 7 weeks now and life has improved drastically 😊, don't get me wrong I still get the odd times when I am rubbish and still have little clots that wiz up , but apparently it takes time to settle down , but please get him to put his foot down , his own GP can refer him . I also just read a book called sticky blood by Kay Thackray , it's a must that you and he read this , very informative xx

[mylafont]

My understanding is APS itself isn't necessarily hereditary, but autoimmune diseases are.  in the USA they run 3 antibody blood tests for APS (one of them 12 weeks apart). Lupus anticoagulant, IgG anticardiolipin, Beta-2 macroglobulin.

Along with other obvious other APS symptoms you should be able to get a diagnosis of you are persistent with your doctor. 

My grandmother had hasimotos, which I inherited, and my dad has adult onset lupus. I've told my daughter to be very aware of odd symptoms and she's already told her OB-GYN that I have APS. 

My son so far is OK, thank you God.

Yvonne. 

 

[amy1808 in reply to mylafont]

Her IGI blood tests have come back positive twice now and she has Vasculitus which is auto immune as well X I have lupus and APS x

[Lure2 in reply to mylafont]

The three tests for APS are: Lupus Anticoagulans, Kardiolipinantibo

[Lure2]

The three tests for APS are: Lupus Anticoagulant, Kardiolipinantibodies, Beta2Glycoprotein1.

Kerstin

[mylafont in reply to Lure2]

Yes...I think here in the US the spelling is a little different. Plus I misspelled one in my post. But those are the three tests.  I've had so many tests done over the years, searching through my online test results took forever to find these. 

[MaryF Administrator]

A good idea, to test yourself and daughter regularly and be under a recommended specialist, best of luck, let us know how it goes.    MaryF

[Holley]

To echo what Yvonne said, autoimmune diseases run in families. My father had MS, my sister has Crohn's and one of my cousins (on father's side) has MS and her sister has Meniere's Disease. My grandmother's sister had Lupus and I believe my grandmother most likely had APS. She miscarried in between each of her 4 children and had a stroke. 

It's great that you're very aware and know your body best.