An aps newbie: Aps patients and their relationships with medical professionals

I've recently been diagnosed with primary aps. The diagnosis is not a surprise - here's a brief overview of events that have led to it:

- 5 miscarriages, 4 consecutive following one successful pregnancy in the space of 2.5 yrs

- experienced blood clotting within the uterus during my daughters pregnancy, bleeding for the first 15 weeks

- the premature birth of my daughter (32 weeks gestation) and born with a congenital abnormality called TOF's (tracheo oesophageal fistula and atresia)

I have always suffered with pins and needles, poor circulation, word muddling, insomnia etc and accepted this as part of 'my' normal. I also suffer with moderate psoriasis (approx 20% coverage).

Whilst the condition is daunting, what worries me more is the lack of understanding and sympathy within the medical profession. From personal experience, my previous doctor was extremely dismissive of the miscarriages, regarding it as "bad luck". He simply advised taking folic acid and suggested that after 6 or 7 miscarriages there maybe cause for investigation. By miscarriage 2, I pleaded with him to look into it. He didn't. I went to him with the issue of stiff hands and knees, believing it could be the onset of psoriatic Arthritis and he did request testing. When inflammation couldn't be found, I was again dismissed despite the continuation of symptoms. By miscarriage 4, I returned to the doctors office and asked the question "I already suffer with one auto-immune condition, is it completely inconceivable that I don't have another?". Having then been told he had already tested me for auto-immune conditons, the answer was "unlikely", I resorted to more begging, talked about my daughters pregnancy (again) and thankfully he relented.

The Internet, this forum is littered with similar experiences. Books on aps also suggest that finding knowledgable, sympathetic medical professionals who understand the complexities of this condition is challenging.

With this being the case, how do people manage? How do you know who to trust? It concerns me that getting a diagnosis is a fight, finding specialists to listen and believe you is a fight, further treatment a fight and can thus have devastating consequences.

Whilst I accept the importance of being an 'informed patient', it would be nice to hear that my first impressions are a little askew and that it is indeed not as difficult as it seems or maybe someone can shed some light on the realities of living with aps and relationships with doctors/specialists.

Thank you for reading :)

8 Replies

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  • HI there, and welcome, your treatment and poor diagnosis is not unusual, many of us unfortunately have had this experience. I had a similar path to diagnosis, although I did not have the miscarriages, but if you read my personal info, it explains why. Let us know where you are located so that we can help get you the nearest sensible advice. Many of us have multiple autoimmune disorders. There are also plenty of papers on the HSF website which if printed out might make some good reading for your GP, if you still have that one! I hope now you have found us, that things may improve for you. You have had a tought time, sorry to hear about your various losses. Mary F x

  • Sorry for all the pain you have. I have all the symptoms of Hughes syndrome, including late miscarriages ang a low birth weight son.

    I couldn't believe how ignorant Docors are about this condition. Including my Gp and especially my Neurologist who I can't say how much I hate, for allowing me to continue to getting much worse.

    I wish professor Hughes could embarrass them all & show them that this condition exists

    I am now under the care of st Thomas who are absolutely fantastic, even realised I was serverly depressed considering I was in tears for most of my hospital appointments and couldn't really fight my corner.

    I don't know how I can help apart from printing stuff off the Internet and giving it to surgeries locally, but I think it should really come from the top, please professor Hughes sort these Doctors out in the UK

    Then none of us would have to suffer like this

  • Im not having much luck today with most of my answers disappearing into HU's cyberspace!! I replied earlier and now see that you are another victim so I will have to try and remember what I said!!

    I am so sorry you have been treated so badly at the hands of these medical Doctors. Every patient has the right to be listened to and their views respected and it seems to me that in yours and many other cases this is just not happening. In this day and age especially in Obstetrics there is no excuse for any child to be lost due to arrogance and ignorance as even one miscarriage is a loss too many and that seems to be what happened in your case. If you are in the UK you may want to think about contacting the Patients Association who would help you to take any complaint you have forward.

    It also seems to me that we now more than ever do have to and are expected to become "expert patients" for our own good because if we don't there is no one else who will advocate on our own behalf anymore. When we are tired, unwell, and exhausted with our symptoms this is not what we feel like doing so finding a good APS specialist who we have a good rapport with is therefore more important than ever.

    I would also point out that this Forum is on the HU platform but it is actually run by the Hughes Syndrome Foundation Charity who have and will be producing an even better website in the coming weeks with very informative information for people to download and take to their medical professionals. Therefore if you (and everyone else) has not thought about joining the charity perhaps you might like to do so. It is only by collectively belonging to an organisation who has some clout with a name such Prof Hughes and the other respected APS specialist that do so much for the cause that we can do more to raise the profile and awareness of the condition.

    I am saddened to read your story and I am so sorry for your loss, but my anger just makes me want to push harder to correct the wrongs that are happening at what seems to be an ever increasing rate. x

  • I have phoned the patients association and they believe my experience with my former gp to be serious enough for the attention of the general medical association. I will call tomorrow and take it from there.

  • Many thanks for the responses.

    MaryF - I'm based in christchurch, dorset. I have since changed gp's of whom was aghast that my previous gp didn't do more for me. He is much more understanding, however admits that he doesn't know much about the condition, considering it "specialist" work. I appreciate his honesty.

    I cannot understand why the standard of care for aps patients is as it is. Whilst I can sort of understand that gp's may not be enterly up to speed, for a specialist not to keep abreast with new conditions/ research (especially after 30 years and the predicted prevelance of aps) confounds me. I just don't get it!

    It makes me sick that women go through the heartache of miscarriage time and time again at the expense of a doctors unwillingness to consent to a £35 blood test. I intend to join the Hughes charity and thank you for the patients association referral - my partner and I are in the process of compiling a complaint against my previous gp and the PA site has some great info.

  • Hi Maybells.

    Welcome and you are among friends here.

    Best wishes.

    Dave

  • So glad you have found a better GP . I think its reassuring in a way that your new GP admits not knowing much about it. The worst ones are those who think they know and have actually only the most primitive grasp of the condition. It amazes me that so mantra take the view that if they don't understand what is wrong with you then it must be all in your head ! Hardly a scientific approach. I have seen two GP s this week who both admitted to not knowing much about it which is preferable to being ill informed but appalling really given that this is not a rare condition and affects so many other conditions.

    In terms of how to manage you have done the first step in finding a GP you can work with.You also need a specialist. This group are compiling a list of good doctors around the country. This is useful in finding agood specialist. You also can get lots of well informed advice and support from here. All the very best, Ann

  • Glad you have found a good GP. Learn together was my motto with mine!

    Please do consider doing the Expert Patient Programme. This is a free course for 6 weeks run by local health organizations. It transformed my life with Hughes. Just try googling it to find one near you. I think everyone should do it.

    Blessings Ann

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