Advice for a newby?

[Northy81]

Hi everyone. I've just been diagnosed with APS as a result of investigations for recurrent miscarriage. I've been given very little info about the condition, except for a broad plan for how they will treat me if/when I become pregnant again. Should I be worried about the other potential symptoms? I suffered severe migraines as a teenager, but not so bad in my 20s. I'm 30 now. I sometimes get achy limbs and pins and needles. Should I seek advice from a specialist? The consultant who diagnosed me is only concerned with the disease in relation to miscarriage. Having read some of your stories I'm panicking a bit, but don't know if I'm overreacting. Thanks in advance for any advice.

[MaryF Administrator]

Hi there and welcome

Firstly you are half the way there with this, at least some sort of diagnosis. You are right to be wanting clarification regarding this disease, and you probably need further investigations. Do you have a good GP to refer you to St Thomas or perhaps engage with others on here, it would be helpful to know where you live.

Some people need many drugs, others less, myself, fragmin through pregnancy, however now for me aspirin twice a day, some of us have multiple disease so many different combinations of drugs.

However it is worse not to have the diagnosis. gradually as you use this site more your questions will be answered in greater detail. The Hughes Syndrome Foundation has many medical papers for doctors. I also advise that for any appointments you list a chronological list of events to date, this will help you and them. Best wishes, you are well on the way to getting to the bottom of things, and it may be that you need very little intervention outside pregnancy. Please don't panic, lots of us have it to different degrees and we are all different. Mary F x

[Suzypawz]

Hi, like Mary says......you are 1/2 way there for getting diagnosed ..... now you could do with seeing a specialist really to talk more about maybe going on medication now, or at least until you decide to try again for a baby, then they will put you on the needed drug for pregnancy.

Please dont get too worried about what you read on here as even tho' we all may have Hughes we all have different degrees with it....some have other disorders too....this doesn't mean you will too. We have a lot of symptoms the same....but some have more of some than others.

There is a lot of info' on here & I'm sure people will answer most questions you may have, also there is a lot of info' on the Hughes site that may help you with your questions.....I have a website too that on 2 posts on it & has a lot on about Hughes & other diseases & media we have found on it etc.

suesart.co.uk/

I hope we can be of help to you, take care of yourself & I hope you find a suitable specialist or get in at St.Thomas' Hospital in London.

Keep ok & let us know how you get on, Sue x

[emmaj]

Hi, there is obstetrics anticardiolipin antibodies that only affect some people in pregnancy alone, it seems pregnancy can trigger this,they just dissapear afterwards and cause no other problems outside of pregnancy, I saw a proffessor who seemed to think that was the case for me, and showed no interest in the long term future for me - so hopefully you may be one of the lucky ones and it causes you no further problems once youve completed your family (and im sure you will - we did). Once you have the correct medication the odds of a healthy live birth go from 15% to 80% with that treatment. I got high dose folic acid (5mg) and started that before conception (i believe anybody with a chance of having placenta problems should give it the best chance possible of forming correctly and being strong and the antibodies target the minute vessels of the placenta when active). I started aspirin (75mg) before conception and multivits and once pregnant started heparin (anti coagulant) injections and continued these until 6wks after birth. I wish you all the luck in the world and lots of baby glue and the strength to go through another pregnancy xx

[emmaj]

oh and I would stay on aspirin until you can get to see a rheumotologist after pregnancy just to safeguard yourself until they are sure that its not affecting you outside of pregnancy too. All the specialist consultants I saw when planning a pregnacy seemed to know their stuff about it no matter where i went, its now the 1 in 5 reason for recurrent miscarriage and poor fetal growth so well known about in the maternity parts. You probably will automatically be under a consultant rather than just the usual midwife led care. I also had cervical length scans after 16 wks to make sure I wasnt getting ready for premature labour early as they can give medicine to stop it. I get a lot of pins and needles and my neurologist has put me on iron and it seems to be ok - if you have had a lot of bleeding or miscarriages that may be of help too.

[jessielou]

Hi northy

Welcome and glad you found us, so sorry for your losses.

Good to know you close to a diagnosis, please take what you need from the information available on here but try not to panic as some of us have other autoimmune system disorders too. We are all so different, yet do have some symptoms in common. Try the Hughes foundation website on hughes-syndrome.org, it has loads of useful info too.

It would certainly be a good idea to find a rheumy or haematologist, or if you In UK try get referral to st Thomas's in London.

Hope you get some answers, we're here and will help if we can.

Take care gentle hugs love Sheena xxxxxx

[Northy81]

Thank you all so much for your kind words and advice. I'm going to ask my gp to refer me to a specialist. Thanks again xx