I am pretty new to this site, and got a diagnosis of APS a couple of months ago after years of wondering what was wrong with me.
My symptoms started with blotchy skin (corned beef skin) as a young girl, and then major migraines as a teenager, i saw a haematology specialist and he said there was nothing wrong with me.
As an adult i have experienced 3 miscarriages and saw the specialists in Shrewsbury hospital who discharged me and said my miscarriages where down to bad luck.
My dad heard a radio station talking about hughes syndrome and the symptoms and thought it sounded a lot like me, i asked my gp to refer me to a specialist and he wouldn't as he said Shrewsbury were following European guidelines!
We paid privately to see Mr Raj Rai at st marys hospital London and after tests he diagnosed APS and factor V Leiden.
Since then i have been back to see my GP to express that me and my husband are planning to try for a baby and to ask if he could refer me to someone who could look after me in pregnancy with knowledge of hughes. (closer than london) My GP was very patronising and basically said that APS is controversial and the referral was unnessacary.
So i did a bit of searching on the Internet and came across Liverpool Womens Hospital (which is about an hour from me) I e-mailed them through a link on the site, explaining my situation and concerns, i was surprised when the next day the Matron e-mailed me back with a reassuring e-mail explaining that they could help me.
After persuading my GP to refer me, I had my appointment yesterday, my GP had told them that i was looking for a second opinion?? I think he was the one looking for a second opinion!
Anyway I saw Ms Dawood, and what a lovely lovely lady! I feel like a weight has been lifted after speaking to her! She explained everything to me so clearly- the risks with pregnancy, my situation, the precautions they take, how often they do scans, the birth EVERYTHING! And she has agreed to look after me from conception to Birth, I feel relieved!
I basically wanted to share this on here to help anyone in a similar situation.
So now all i need to do is get pregnant! hopefully things are looking up!
sorry to waffle, but i wanted to share.
Good luck, and take care everyone
Kim
xxxx
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Kimmichelle86
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Really pleased for you what an awful gp I would see if another one would be more supportive Hope you don't have to wait too long keep us informed. Good luck Karen xx
Thank you Karen, yes i am going to request a different GP next time i go to my surgery, thank you for your support, I will keep everyone informed, it's great to have people to talk to Kim xx
Hello and welcome, I am sorry about your past miscarriages and the awful attitude of your GP, you would think after your private appointment and guidance, that the tune would have been changed, unfortunately some not so professional appear to take a line and refuse to budge, very very silly of them. It is really useful for us to hear about such modern care with a professional in Liverpool, please keep us posted, and yes I hope you change your GP. Mary F x
My GP just has a bad attitude towards APS, and has actually mocked Mr Hughes himself in front of me, i do not understand his attitude- apart from ignorance!
I am over the moon with Liverpool- i will keep you posted! thanks again, Kim xx
That is atrocious, however I had a similar attitude displayed in my area at the local hospital by one paediatrician... my children were ill for ages, now my daughter a diagnosis of SLE Lupus (seizures and extremely bad health), and probably Hughes Syndome, my son now under the radar of the right person due to a migraine which lasted 15 months and 4 days, with blackouts, vomiting, dizziness and dead legs! The same person was also rude about my own!. Sometimes the wrong ego's work in the medical sector! We just have to move on from them, and find better ones, if possible! Mary F x
Hi, two of my pregnancies were at shrewsbury - now you have your diagnosis you can be treated anywhere inclding back at shrewsbury - my consultant was dr mohajer - lovely lady who really listens to you and your instincts and saw me every two weeks and had my son out early and understood hughes etc good luck xx
Unfortunately my GP has been in contact with Mr Sizer (who i was under because of my miscarriages) at shrewsbury to inform him of my diagnosis, but he doesn't seem to think its high risk? I have unfortunately lost faith in Shrewsbury and i am going to stick to liverpool, but im glad you had better experiences! thank you for your support xxx
Hope, I just have had to take 80 mg. of aspirin since having a baby, but now, 15 years later, I am on the way to the rheumatologist as some joint and muscle pain have emerged....
Good luck with your prospective journey into parenthood. I too have both APS and Factor V Leiden! I've been told its quite rare to have both of these conditions. I dont think I'm far from you either, as I'm on the Wirral. I was only diagnosed with Factor V Leiden when my son was 2 (after my first DVT froma plane flight), and APS just last year. I have had the symptoms for many years, but unlike you I have a very supportive GP, who cant do enough to help. I do take medication but it is far from stable, and I'm waiting for an appointment at St Thomas's to see a consultant who may be able to help me. Again, good luck, and keep in touch
Hi Lynzy, Thankyou for your message, yes i too was told it is rare to have the both, no your not far at all, i thank god havn't had any clots that i know of, and i do not take medication day to day, i wish you well with your appt at st thomas's...i hope they stabilize things for you, thanks again for the well wishes, i will keep in touch xx
Good luck Kim, so pleased that you have the reassurance of someone who knows what they are doing, it made all the difference for me. I had two late miscarriages as APS diagnosed too late (well not out of the woods on the diagnosis yet but that's a separate post) . My third pregnancy had full APS protocols - baby asprin before conception, anti-coagulants (heparin or clexane - can't remember which) as soon as I was pregnant, loads of scans and all antenatal appointments with a fantastic Consultant Obstetrician none with a midwife or a junior member of his team. Baby induced slightly early at 38 weeks as he didn't want to risk going full term having got so far - wasn't told that was likely, so mad panic re-arranging maternity leave. Pleased to say my daughter was born tiny but healthy - and is now a very lively 7 year old. Keeping fingers crossed for you. Alice x
i am sorry about your miscarriages, but how wonderful about your daughter! this is reassuring for me, that it can happen everyone is so strong on here, and it's great to hear everyone's stories and experiences, thank you so much for taking the time to reply, you have given me hope for future pregnancy, thanks again, kim xx
Put a smile on my face way over here in Vancouver. I had a similar experience; 3 miscarriages and told to 'pray'. (!?) Congratulations on pushing through, sister, and not taking no for an answer.
I ended up with a genius hematologist and neonatologist. Took heparin and aspiring and delivered, like Alice, a week before through a planned c-section. Baby girl, normal weight who is now 15 and giving me a run for my money!
Best of luck to you, Kim, keep us informed so we can cheer you on from the sidelines.
Glad i have given you a smile I am sorry to hear about your miscarriages, but am very glad you found that hematologist, i have been advised to take heparin and asprin also during pregnancy, so it is great to hear that you had success with it I am so glad you have your daughter and thank you for sharing with me, it gives me so much hope
Thank you again, and i will keep in touch! thank you for your support
My pleasure; it makes such a difference to know that there is hope...and there is! I didn't particularly enjoy injecting myself 2x day but there was some humour to be found....looking like a junkie in the bathroom stall of the Four Seasons during a wedding....hahaha. Just remember that NOTHING is your fault. I had doctors telling me that I was too stressed, etc., at the end, this brilliant doctor looked at me, after my 3rd miscarriage and said, "If stress caused miscarriages, why are there women in wars that still deliver babies??"
So glad you found someone to take care of you, Kim. Don't let them get away and bake them stuff.
I am defiantly going to request a different GP, Im so glad iv found a good consultant at the Women's hospital, Yes Mr Rai at st mary's said that i would need heparin and asprin during pregnancy and 6 weeks after, but im not currently taking anything.
Yes i will keep everyone posted, it's such a great support here on this site, i'm so glad i found it! xxx
best of luck hun - i think only finding someone you can go through the journey with and feel at ease with and feel supported all the way is the only way you find strength to take the chance and o through such a rollercoaster again - let us know how you get on - and sending you lots of baby glue xx
I can't really add much, just wanted to say hi, welcome you to our friendly site and wish you lots of luck and good wishes for your journey into parenthood, I'm so glad you got decent team at Liverpool to look after you. I'm sorry about the ignorance over your miscarriages, sadly there are some egotistical fools in the medical profession,
Congrats! How exciting for you! Enjoy it now! Every year goes by faster! Lol. It seems ,like yesterday I had my youngest son, and he just turned 12! My oldest is leaving for college, and my middle one is driving! Lol.
I am very sorry for your losses. I had 3 losses as well. It is very difficult. I wish you the best of luck. I was DX in 99. I did have a son after. It took a lot of monitoring, but well worth it. My youngest son just turned 12! Now I did have complications, but not all were related to the APS. So good luck and God Bless,
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hopefully things are looking up! 
Haematology appointment
How do you get proper treatment when the dr you see at Lupus Unit St T says he will see me in one year!
APS after 3 miscarriages and a still birth AND a premature baby?!!
Eliquis/Coumadin
Thank God for this website!
