Any success stories out there? Newly diagnosed.

Hey everyone, my name is Catherine and I'm awaiting a haemotologist appointment for official diagnosis. Here's my story... I fell pregnant with identical twins a year ago and after a threatened miscarriage I made it through to 7 months and then lost my shared placenta twins suddenly. The obstetrician sent the placenta away, a blood clot was found in it and my blood tests came back positive for lupus antibody. 12 weeks later, repeated tests showed still lupus so she said I most likely had primary antiphospholipid syndrome. I'd never heard of it. I also had thrombophlebitis during the pregnancy too that was treated with heparin. Sadly I also needed aspirin as this apparently crosses the placenta so will need that in future pregnancies as well. Last weekend I woke up with visual disturbance. Black discs at the top centre of my vision when looking up, I went to A and E and they ran many tests and did a brain MRI. Thankfully it was normal but they said the symptoms I had were consistent with a very small deprivation of blood to the occipital part of my brain. Scary stuff. My eyesight has since got better, almost back to normal now. They told me to take aspirin while awaiting to see haemotologist. Could this visual disturbance be part of this condition? They said my eyes were fine, although have appointment with an eye doctor on Friday to double check.

My Grandmother had Graves' disease and psoriasis. We also think she had Hughes too as she had one very tiny baby- my mum. She also developed a clot when having her thyroidectomy aged 34 and then many TIA type symptoms later on. She lived to 95 though.

Really I wanted to ask, have any of you had successful pregnancies with Hughes? It's going to take a lot of strength and courage to do it all again. I'm 31 and up to last year had had good health.

Thanks for your advice in advance.

Catherine

[MaryF Administrator]

Hi there, and a big welcome to you, you have landed in the right place. There are plenty of success stories on here, and some have also shared a similar history to you. Your family history is quite typical of many. Professor Hughes himself often talks about the trio of disease which is Hughes Syndrome, Sjogrens and also thyroid issues. Also many of us have extra autoimmune conditions. You are well on the way to easing some of your symptoms and also having safer pregnancies, (so sorry for your loss), and yes this can happen with the eyes re clotting. You will gain much advise on here and also peer support.

Our main charity website - hughes-syndrome.org/ also has plenty of medical papers. Please ask about anything on here that needs further clarification. The biggest hurdle in the main is getting a diagnosis in the first place, some have gone for years or decades with many awful events before diagnosis, so it is good to hear that you are being cared for with good attention to detail. My relatives have had similar issues to me, going back more than one generation, although this does not happen in every family.

I have three lovely children - 23, 16 and 14!

and a film for you: youtube.com/watch?v=3LXWT6C...(Not working as expected?)

Mary F x

[SassyOne]

Welcome! I'm 30, I have a 2 year old daughter & I'm 14 weeks pregnant again Like many of the women here I too know the pain of losing a baby. With the proper treatment & close monitoring you can have a baby to hold in your arms. Even when I was pregnant with my daughter I had a difficult pregnancy with many complications (bleeding & other) but she was healthy the good news is that APS is treatable. Now with your diagnosis you can start a family. You definitely meet the criteria for diagnosis. Now you can move forward. Best of luck to you & your family.

[windsorGirl]

Hi everyone .My name is Beth or WindsorGirl. I have finally found other people out there with Antiphospholipidantibidy Syndrome .It took me a year to spell it and also pronounce too. On my 50 birthday I was told I have Hughes Syndrome. I live in Windsor Ontario .I am now, 53. It feels great to finally have other people who have the same condition. I try to stay positive, each new day is now a gift. I try t stay active I am have been taking Aikido lessons, and also Art. I suffer from depression. We have the best program here in Windsor for Depression. It is called Stages. It is a great support group which is offered 3 days a week. I am wish there was such a good group in other Cities. Catherine it is a pleasure to meet you, and hear your story. Keep your chin up. Bye for now WindsorGirl

[jetjetjet in reply to windsorGirl]

Hi Beth - we are both on the same continent - practically neighbors- i'm in the states -- N.H. -- i'll have to check the map . -- it's good you found us { althought some may not agree with meeting me ??? } you are 3 years with this - I'm 3 and and a half ; almost the same anniversary:-)------- Catherine , you are testing positive for lupus and APS and they say you are primary ???? jet

[Stella]

yes, the eye thing is very much part of my Hughes experience. I was treated with aspirin, originally, but then anticoagulated with Sinthrome (allergic to warfarin) later on.As to children, I lost two babies at 32 and 34 weeks, but now have two sons, aged 26 and 29 after treatment with heparin. It's a long journey but with diagnosis and correct treatment you have every chance of a successful pregnancy. My very best wishes for the future, Stella

[GinaD]

Ditto with visual disturbances. Multiple mini strokes/ TIAs ( the difference is in the judgement of each doctor!) I was left with a hole in my visual cortex which I have named my Psychodelic gummy worm. He is shaped like a gummy worm and in bright light, or when I close my eyes, he pulses with bright colors.

Of course I only see him when my brain can not " stitch in" what my brain rationally knows must really be there. And ( should I be sad? He's like an old friend now.) over the 13 years since my diagnosis he has faded away into nothingness. His only current remnant is in my inability to use one of those helmet-mounted rear view mirrors when cycling. I'm off to the bike store today to fetch larger, perhaps handlebar mounted, mirror.

Clots do dissolve --either on their own or with treatment. And, contrary to old thinking, brain damage can be self-repaired.

Farewell Psychodelic Gummy Worm! Truth be told --Can't say I miss you.

Gina

[Hidden]

Thank you everyone so much for your kind responses. By some small twist of fate. I've discovered this morning that I am pregnant again. I've been on the phone like a shot asking for the Fragmin to go with my current aspirin. Hopefully will get it this evening. Life really is unpredictable!!! It's so good to hear of success stories though. Thank you.

[MaryF Administrator in reply to Hidden]

Well done for being so swift off the mark and proactive - this is what it takes, reading, listening and then moving, good on you, and the best of luck, very pleased to hear your news. Mary F x

[Flyingdutchie]

after 1 healthy child and two miscarriages, diagnosed with APS, now 12 weeks pregnant on aspirin and heparin. I hope my pregnancy is going to be a succes story, but am already thrilled with the fact we survived the first 12 weeks. Good luck with your just found out pregnancy!

[stillwaiting]

I am so sorry you lost your babies. I have three children - aged 26, 24 and 19. I lost two babies. I have been diagnosed for just one week today. I told my sons that they are my extra special miracles!

Congratulations on your pregnancy and well done getting treatment sorted.

Lynn.x.