Unsure and concerned?

Hi, Everyone.

I'm new to this whole APS syndrome as I am now the carer of a young lady who has this disorder and has been battling it alone for the past 15 odd years.

Firstly, thanks to all who post here,as it helps many others who are seeking answers to their own circumstances.

Secondly, as we are on the other side of the world news is hard to come by.

Here in Australia, the syndrome is virtually unknown by the medical fraternity.

Treatments are basic (at best) and many sufferers of this disorder have gone through most of the trials described by many of you over there.

We are searching for anything that we can use to inform her health care people of just what she's going through.

I attend her medical appointments, to help her explain what happens to her during the times that occur in between.

Currently, her symptoms include violent shaking, loss of stability, migraines, pain in the chest, dysrythmia and inability to commmunicate.

She feels lost and gets depressed when this happens - totally understandable.

Any help will be greatly appreciated.

Thanks,

WayneL

24 Replies

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  • Hello and welcome, firstly the lady in question is very lucky to have the quality of concerned and professional care from yourself and.... please do go onto the Hughes Syndrome Foundation Website, this forum is attached to it. You will see a wealth of information and research papers you can print out

    . Also do please put up another blog post asking for contacts in Australia as there are a few on here from that area of the world. Providing proper medical papers will help inform her care, as this is a familiar problem, and do keep in contact on here, as people will be keen to help you beyond myself. Medics love a good paper or two to read... if something is an unknown quantity, perhaps they can email other professionals on the papers as well. Good luck and please do put up that next post. Mary F

  • G'day, where in OZ are you?

    I am near Windsor NSW

    lucky1

  • Hi, Lucky1.

    We live in Geelong , Victoria.

    Her MD is located in Lara.

    Just a short trip really.

    Thanks,

    Wayne L

  • Hi there

    Hope now you have found us, you can post regularly with questions. As a carer you must do a fantastic job, and hopefully you can convey warm hugs to the lady you look after. She is not alone and hopefully we can brighten her approach a bit by just being here.

    Communication must be difficult, hope things improve for you both, and that you get some treatment sorted out.

    Welcome and big hugs. Do make another post looking for more Oz contacts. Would like to visit some day...its always been a dream of mine.

    PS, I am following my dream already as I live in Spain, near barcelona....but always dreamed of touring oz for a holiday

    Big hugs

    Sara xx

  • Hi, Sara.

    Thanks for the great welcome to this site.

    I have conveyed your hugs and hope that you get your wish soon.

    The feeling of isolation many of the APS people get over here is overwhelming, mostly due to the lack of information that GP's have about it.

    Hopefully, we may be able to do something about it.

    Be in touch,

    Wayne L

  • Having you as a support will mean so much to your lady as apls can be so isolating.

    I am in Australia and have made quite a few posts since joining this site not so long ago so if you see any posts from me then I'm referring to my experiences here in Australia and they might be similar or of some help to you.

    Thank you for being there for your lady.

  • Hi, Tassie.

    Thanks for the info.

    I was beginning to think that she was unique in Oz.

    There are so few medico's that have any idea of what APS is and what to do about it over here.

    Her GP is treating her symptomatically (which is about all he can do) and I'm sure that he is trying his best to get a grip on this thing, but it still leaves us with a lot of questions and other related things to deal with.

    All I can say is hang in there and keep searching.

    Wayne L

  • Does she have a rheumatologist? If not see if you can get a referral. Maybe ring around and see which ones have any experience with APLS first.

    Oddly I went to a rheumatolgist more than 20 years ago and as a new specialist out she couldn't work out what was going on. Then 8 years ago after several miscarriages I got referred to her again and she is now the rheumatologist in this state that has the apls experience!

    Research, research, research and go armed with good quality information so you can guide your medical team in the right direction. If you aren't happy with what they tell you see if they are willing to learn or get another opinion.

    In my experience drs make lots of mistakes so you really need to know what you need going in ...if what they suggest doesn't seem right ask them for more information to clarify, for references or a second opinion.

    If you can't find a dr that knows their stuff, find one willing to learn ...they can be your best ally.

  • Hi, Tassie.

    Thanks for the support.

    We're in the process of finding a rhematologist for her and have been given some great "leads"from others on this site.

    Will be chasing them up asap, and will keep you all informed as to our progress.

    Once again thanks to all of you that have replied to my queries.

    WayneL

  • I am very pleased you are finding the site helpful! Mary F

  • Hi Wayne feom Lara- my dad used to get rabbits there many years ago, however I 'm in North Queensland, and I totally agree that most GPs and specialists know virtually nothing about APS. The problem is that the Syndrome differs so widely in symptoms. Women with multiple miscarriages can be diagnosed sometimes, however when it can cause an early or even multiple strokes, or attack other parts of the body d/x is harder or weirder. I found the Hughes Syndrome site, and Hughes Foundation very good for me. First I found The Lupus Book by Wallace available in local libraries, but other textbooks by Dr Hughes, Kay Thackray's Sticky Blood, and Talking about Lupus by Catriona Holden and Hughes excellent to explain APS. Luckily I found a European eye specialist here who knew Retinal APS so gave me the referral to go to London Bridge Hospital- d/x was positive, so was given details of a lady rheumatologist at Westmead Hospital, Sydney- I've flown down 3 times. There are APS closed Facebook groups -one fairly new is the NZ/Aust APS group rather quiet, and the NSW Lupus group from Westmead Hospital, and an USA APS group, also the Lupus Foundation is splendid. Two of us up here would like to form an Aussie group but not on Facebook - because of the 10 miscarriages my friend has had- now has 3 children- luckily she found a gynacologist in next city who helped her, but we would like to write a book about our experiences/misdiagnoses. You are welcome to contact me further. Best wishes to help your young lady- other peoples' experiences, and books written by researchers have helped me

  • Hi, Marycath,

    As my young lady has been talking (when she's able ) about her past life, I am shocked to discover the things that have happened to her when she sought treatment for things like blood clots on the lung, legs and other ailments, All of these are related to her APS and were not diagnosed until she came here to Victoria.

    She has been placed in a Psychiatric ward, she has been given asprin and told to go home, she recently had an MRI (inconclusive , of course) and was told that there was nothing to be done.

    Her current GP has at least a vague idea of the syndrome, but is at a loss (I feel) to be able to treat anything other than her manifesting symptoms.

    We are looking to find her a Rheumatologist near here to help her with her disease and to make her as comfortable as we can.

    Thanks for the support and remember that you are not alone.

    Wayne L

  • Hi there,

    Australia... I found out I had APS after a clot during my honeymoon 7 years ago. We went to Australia.....a very long flight. I had to "fight" against several different docs till 6 months later one of them hit the target.

    I usually do not post, but I read the blog quite very often. Reading about APS and "listening" to other people with the same problem will not cure it, but i like to think it is part of my treatment.

    The World is not so big any more.

    Hugs,

    David.

  • Hi, David.

    After several attendances to our daughters GP, I came away feeling that he has very little idea about the whole APS thing and has been treating her symptomatically. I guess that in his shoes, I would have at least attempted to have some idea about this.

    In Australia currently, there are only a handful of specialists that have had experience dealing with the disease.

    Given the nature and ranges of symptoms, it's easy to see where Medical people have been stumped with this one and that so many have been mis-diagnosed as having something else.

    I hope that you're getting looked after and that things are going well.

    I see first hand what this disease is doing, and we are attempting to make her as comfortable as we can.

    we are realistic enough to know that ,at present, there is no cure, but we have hope.

    Thanks for the reply,

    Wayne L

  • Hi Wayne

    Welcome and glad you found us, big hugs to you for being there for her.

    I`m afraid around the world it`s pretty standard to treat the symptoms, I think as yet there is no easy answers and although we have such similar symptoms and disease, what helps some doesn`t help others.

    I think in some ways we have to educate the doctors. My gp said "You have us reaching for the text books"!!... Reach away hon Please!!!! I know my haematologist has been reading up on APS etc and my rheumy nurse who had never heard of APS is learning fast, bless her!!!!

    I hope you find a specialist who can help and we here for you all when you need us.

    Take care gentle hugs love Sheena xxxxxxxx :-) :-) :-)

  • Thanks Sheena.

    Yes, we have had to educate her carers (us as well) , and it has been a slow process so far, but it's getting faster thanks to you.

    We still have a long way to go, but we have hope that we can slow down the symptoms or at least make them bearable for her.

    It's so sad to see the things that happen to her ( and you guys as well!)and we just didn't realise how debilitating this syndrome is.

    It's very uplifting to find out just how much more information is appearing out there now and how much more there could be soon.

    i hope you're well and thanks for the hugs, they're very much appreciated.

    Wayne L

  • Hi Wayne

    you're welcome hon. Just wondering if your daughter has been tried with plaquenil (hydroxychloroquinine)? I have been on it 3 months and seems to be helping with some of the symptoms. May be worth a try, I also take lyrica (pregabalin for pain n definately helps me.

    Is a lot more to aps than doctors know, will take time but sure we can make a difference for those following us.

    Take care gentle hugs love sheena xxxxxx :-) :-) :-)

  • Hi, Jessielou.

    Yesterday afternoon we went and had an appointment with my daughters GP and advised him of the contacts we'd made here and were in the process of sourcing a Rheumatologist for her.

    He was very helpful and said that he'd provide the necessary referals.

    I recieved a call from Dr Tim Godfrey's receptionist advising of a rheumatology clinic here in Geelong.

    We are going to attempt contact with this clinic, bur failing that Dr Godfrey told us he is available for consultation.

    We look forward to getting help with much joy.

    It's been a long, lonely road for her and now we at last see some light.

    As for the planequil, yes her GP has heard of it and what it does, but it is not on the Public Benefits list of meds, so is very expensive.

    Not that the cost is an issue, but it would add considerably to her drug bill.

    Hugs to all,

    wayne L

  • Hi Wayne

    I hope the rheumy clinic can help n good news that you have the back up of Dr Godfrey. I'm sure at the least they can alleviate symptoms so life a little more bearable.

    Good luck n hope all goes well.

    Take care gentle hugs love Sheena xxxxxxx :-) :-) :-)

  • Hi, Jessielou

    We Are in the process of selection right now and will hopefully by

    weeks end have some further news

    Thanks

    Wayne L

  • Hi Wayne

    sorry missed your post. Glad you getting sorted. Any questions, help n info or a rant, we here hon.

    Look forward to hearing how it goes.

    Take care gentle hugs love Sheena xxxxxx :-) :-) :-)

  • Hi, Jessielou.

    We have an appointment with DR Tim Godfrey in Malvern ( a suburb of Melbourne) in April.

    He is one of the associated doctors with the Hughes Syndrome Foundation.

    The Rheumatology clinic down here in Geelong, would have referred us to him anyway.

    It's wonderful to finally be getting some help over here.

    Thanks and big hugs to you all from us in Australia.

    XXXXXX

  • Hi Wayne

    I`m so happy you got an appointment with someone who understands Aps, I do hope you finally get the answers and ways to help her feel better.

    Good luck,

    Take care gentle hugs love Sheena xxxx :-) :-) :-)

  • Thank you,Sheena.

    It's so good to know that at last we'll get to talk with someone who has some APS experience.

    Her GP has tried his best over the last couple of years to understand what her condition is like but could oly prescribe things to treat her symptoms.

    We look forward to the specialist appointment with much hope.

    Wayne L

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