I was diagnosed with APS in 2009 after losing 5 babies. When i discovered I was pregnant for the 6 time I was put on 150mg of Aspirin and 20mg of Clexaine injections daily for the whole of the pregnancy. It worked and I gave birth to a beautiful baby boy last April .
Anyway the thing that I am concerned about is that I’ve never been checked since. I get bad headaches regularly and tingling pins and needles in my hands. I have been to doctor and mentioned this and said could it be the APS and he just says no your just tired! ??
Am I being a hypochondriac and worrying unnecessary or is the doctor right that i only get APS when pregnant?? Confused!
Tracey
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Traceyhems
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The particular doctor may be only partially informed on the full nature of APS, arm yourself with print outs regarding APS, and pay another visit, and if not helped, you may need to perhaps access another GP or consultant. By asking other members on this site, who they know of in your geographical area regarding APS... this will help you to push for the right appointment, and the best of luck, I myself (seronegative Hughes), was treated only during pregnancy...this condition varies between people, however, it is not a condition to be ignored outside pregnancy. M
Hi Traceyhems, I was also diagnosed with pregnancy only APS after having 3 consecutive miscarriages. However, I've been doing some reading up on APS and with a long haul flight to take decided to see my GP. I was advised to inject Heparin for the long haul flight and to take daily aspirin long term. Even when not pregnant APS does put you at a higher risk of blood clots. It's all still quite new to me and I've still got loads of questions myself. Definitely speak to your GP about managing your APS when not pregnant and go armed with questions to help your confusion .
I am fortunate to have 3 children, but have had many losses along the way.
After a dvt then Pulmonary embolism in 2007,still no diagnosis. However, after seeing a Tv article about Hughes Syndrome last year, I asked to be tested and recently diagnosed with Hughes, Fibromyalgia and Lupus Symptoms overlap. So now I know why all the losses, and heartbreak that goes with them.
I would advise pushing for more tests and to see a haematologist, who will have more idea than some Gp`s.
I hope you are well today, take care, gentle hugs, love Jessielou x x xx
So delighetd to hear your son is well. Having come through some faily horendous experiences myself like everyone here, can I encourage you to go bakc to your GP or the hospital where your son was born and just be as belligerent and insistent as you can that you get checked again? Are you warfarinised? I have had a ton of crap form drs (again, who here hasn't an it is only through gritted teth adn deetermination that I have mad people listen to me - which they do with arrogant reluctance.
DOn't be put of. I had 5TIAs after my son was born last Sept which were shockingly misdiagnosed as postnatal psychosis and the people who misdiagnosed me still think they were right.
Unbelievably arrogant ignorance.
You know what your body is telling you. My advice would be act on it, and keep telling them you know it is the APS.
Thank you all so much for your advise its nice to be able to talk to people that actually understands. I will get back to the doctors and mention it again armed with info!
Hi Eliza, wow that’s really scary. It really does worry me that something like that may happen before I’m taken serious. I'm not on any medication at all. When I had my son they didn’t know what to do, I had a 5 day labour and was told I had to be clear of clexane and aspirin 24 hours before epidural but carry on until then, obviously I couldn’t say when that was going to be, der surely they know that baby will come when he's ready!! Honestly they didn’t have a clue. Which was really scary as I was looking to them for support.
Congratulations on your little boy. I feel lucky every day to have my 2 gorgeous children (4 & 2yrs) - although not so much this morning when they were fighting over a game :o) !!! I have been diagnosed with APS,Lupus & S'grens since 2005.
I would definitely go back to the doctors to talk further about your condition.
Eliza - I really sympathise with what you have gone through as well.
I just wanted to add a comment about medical professionals. We are all educated in the field of work we go in to and draw from from our formal training and life experience. I have first hand experience and know it is very frustrating (and potentially dangerous for us, as in Elizas case) knowing more about the APS then some Drs and consultants, but we do have to spare a thought that they have not had sufficient information taught to them and they (as we) are learning every day.
I do agree that some could be a little more open minded and consider that we may know what we are on about, but they must come across many people in their profession that 'self diagnose' and not always correctly so I can understand slightly their scepticism. Finding someone that listens is fantastic but also rare!
The HSF are doing fantastic work in spreading the word. Perhaps going armed to your next doctors appointment with some literature from the HSF would help?
Jo is correct. I am a Director of the charity FibroAction fibroaction.org/default.aspx which raises awareness, supports and educates on Fibromyalgia and I also run a local support group. Our biggest complaint is the discrimination shown by some doctors and I do hasten to add "some". It is getting better but it is down to a number of factors. Training, time, ignorance, and prejudice and probably in that order. I always advise if you have a unsympathetic doctor to do a number of things.
1. Book a double appointment
2. Take somebody with you who if necessary can step in.
3. Make notes - bullet points not an essay!!
4. Take literature to give to the GP to read in their time not in the appt
5. Stay calm, be firm, try not to get upset and rehearse before what you plan
to say.
6. If you still have no luck try approaching the senior partner, another GP in
the practise or as a last resort go to your PCT.
None of the above should be any different for APS so please go back and if they are unhelpful you can self refer through the choose and book system to your local Hospital or St Thomas. APS has far more respectability in the medical minds sadly than Fibro its when you have negative blood tests that the problems arise, however you are entitled to a second opinion.
I was shocked to learn of the association between Hughes, Sjogrens, Fibromyalgia, Thyroid Antibodies and Syndrome X. This is something that I will be adding to my list of raising awareness about as there must be many that have these conditions who are unaware they have APS with the possible risks attached.
When I attended the patients forum in I think 2007 or 2008 (cant remember) One of the consultants at Tommies stood up and gave us a talk on Hughes Syndrome. He went on to explain that both the placenta and the brain are the two most sensitive organs in a the body(obviously females when it comes to placentas). This is because they are made up of the finest blood vessels which the sticky blood finds hard to flow through. The sticky blood clots up the vessels of the placenta which then affects the fetus.
I myself have experienced four pregnancies where my all of the babies were extremely small for dates. My first three I didnt bring home, but my fourth I did. My consultant obstetrician commented each time at the extreme infarction of the placenta's.
I was left with not knowing what caused all of this and since 95 I just got on with my life with a nagging thought in my head that this may well affect me later in life. I had no investigations or anything. APS was not heard of at that time and was only just starting to creep into the medical world. I was tested for a rare clotting disorder as part of a trial a year after my daughter was born with negative results and then just left alone.
10 years later my symptoms worsened as I turned 40. I say worsened because ony through getting these worsened symptoms I realised I had lived my life with underlying symptoms I didnt realise I had and thought was just normal me.
So I reckon I have had APS all my life. It has manifested through pregnancy and perhaps through my age/hormone changes/stressful times. Who knows?
APS is for life not just while pregnant and even if you dont have any symptoms it should be monitored and managed properly, not left alone.
I have been one of the lucky ones and not experienced a clotting episode like stroke, heart attach or DVT.. but that does not mean it cannot happen to me.
When diagnosed in 2007 the consultant sent me the letter from his clinic with confirmation of diagnosis. It said obstetric antiphospholipid syndrome. When I next saw him I asked him to change that and remove the obstetric part, because it implied that it only happened in pregnancy and it does not, which he gladly changed.
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