If you could ask the specialists anything at all what would you want to know?

I am trying to put together something to send to some of the APS/Hughe's and Lupus specialists, docs, researchers and professors of things that patients really want some answers for and are wishing to communicate to the docs.

So what are the questions you have? I am sure everyone on here has some excellent ones and can't wait to hear!

I hope to start a dialogue with the pros and open the doors to better communication between the patients and medical professionals as a whole. Its time has come.

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  • i know the 1 st thing that enters my mind is just what the doc s know and understand about a.p.s.. i ask every doc of mine this very question. it makes me feel better and confident with them.

  • I agree. I would like to know how well versed the medical community is about APS. In my experience, it seems many of the doctors and dentists I see don't know much at all about it.

  • Why is the fatigue and aches and pain not recognized its rarely mentioned on websites yet its my main symptoms.

  • Hi Kristina

    How are you hon??

    As above really, we all seem to share lots of symptoms, yet these symptoms are not acknowledged by the medical profession, are they going to listen to what we say, we are feeling.

    Another question is will they please acknowledge that a lot of patients with APS know when our Inr is too low or too high, by how crap we are feeling!!

    I guess my main question is when are the medical profession going to Listen!!!! to us the patients who live with this??????

    Sorry feeling stroppy!!! :-( :-( :-(

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

  • Oh and please hurry up and find a cure!!!!!!!!! :-) :-) :-) xxxxxxxxx

  • Yeah give me a cure to the fatigue and bone / joint pains please doc.

    , I can cope with thes rest, memory, spelling, balance, speech......

  • Oh, WOW! So it's not just me that now has trouble spelling! I have never had trouble with spelling in my life - it was almost as if I could instictiv.....instinc....tell if a word was right, but now, I am finding it really hard, and it's just another blow to the old self confidence. I words mixed up too, so our local once-a-month large refuse lorry which is called a 'bulky freighter' is known in our house as a 'freighty bulker'!!

  • I've never been sure if my spelling and writing have deteriorated due to APS, a Stroke or just getting older. I have to ask my wife how to spell things all the time, whereas it always used to be the other way round!

  • Hiya!What I would most like to know is, am I still a walking time bomb even though I am on Clexane? will I have more DVT's or another stroke with no warning at all or am I now 'safe'?

  • HI,

    I would like it when you are speaking to a doctor/consultant that they belief you.

    sharon xx

    dont think spelt that right?

  • I would ask if doctors understand the ramifications of APS. It is currently a disease which can be managed, but never cured. Got that potential doc? Managed, not cured.

    APS is, like lupus, an autoimmune disease without limits. Lupus goes after various manifestations of DNA; so many -- if not most-- docs recognize that lupus can manifest in many ways. Docs have not made the same connection with APS. APS goes after phospholipids which, like lupus, are found in every cell of the body. So, APS also can manifest in many forms. I would like that drilled into every medical head.

    And also, that APS symptoms change and morph with time. Since we only have statistics backed theories as to what goes wrong to generate this immune system "mistake," we can not understand if and when the mistake gets worse. So a treatment which worked 2 years ago may not be enough now.

    Also, I will echo a wish that doctors would recognize that many of us are rather good at noting certain, individual tell-tale symptoms when our blood is going sludgey. With me, the back of my head goes "numb" and cold after sleeping all night on my back (which I must now do exclusively due to back issues.)

    We're not crazy and hysteric (that is unless the APS is causing strokes or is attacking nerves in the brain.) So, don't assume we are faking symptoms just to crave attention.

    There -- so are you coming up with a "guide to making the perfect APS consultant?" More power to you!

  • I so agree with you, Gina D. Having had positive tests start of 2007 after my own research here in Australia, after a lifetime of illnesses, impossibilities, not one GP or specialists- until 2 years ago would consider Lupus and APS from my accounts/papers of my paper medical history.

    As many of you know, luckily in my city I did find found a doc who knew APS, got my referral to London Bridge Hospital in 2010, and given a contact rheumy in Sydney. But even now, only this doctor here is helping me- others don't want to know, saying on referrals - not APS etc.

  • I recently saw a blog from a presumably private practice that supplies locums. It was about APS and rather brief avice (someone seemed to be setting themselves up to give expert advice on APS/Hughes), the usual sort of basic advice about warfarin therapy or similar. I wrote a reply saying their references to treatment was a bit brief and there was a lot more to treatment than just giving warfarin. I also mentioned that our use of warfarin and INR's is different to most. My reply was removed and I've never had an explanation why.

    What I would ask is that doctors open their minds up a little, that they recognise the complexity of Hughes, that they understand our different needs when it comes to warfarin and INR levels- and that they recognise that those who suffer from it may know something worth knowing about it.

    Thankfully I don't usually come across such arrogance as was apparent on the blog that I saw- I wish I could remember who and where it was.

  • If I've got this right Kristina, you are planning to put the questions to the APS specialists.

    As others have mentioned I would like it to be documented that APS causes symptoms such as pain, fatigue, brain fog, poor cognitive function and many other, some already mentioned, problems

    Importantly I would like recognition that simply thinning the blood will NOT take away all the symptoms we suffer. If this was the case I would be back riding horses, walking for miles, getting a job etc.

    I think I read somewhere that Prof. Khamashta and Prof. De'Souza are looking into this being another facet of the illness and not just caused by the blood being sticky.

    Like Garry and others I now have difficulty spelling which I never did before. It has improved since I went on Clexane but has never gone back to what it was. I used to be a good speller before.

    I think much more recognition of how debilitating this illness can be is essential if we are to get the help we need in every day life.

    Thanks for trying to put this together, if I can help please PM as I feel very strongly about this and would like to help in any way I can.

    Sue

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